full summit binder v01

Canadian Breast Cancer Research Alliance Alliance canadienne pour la recherche sur le cancer du sein

Mapping the FutureNational Breast Cancer Research Summit

CBCRA Members

CBCRA Friends

Canadian Breast Cancer Research Alliance

Hosted by

Alliance canadienne pour la recherche sur le cancer du sein


May 26 - 27, 2008 . Toronto . Canada


May 26 - 27, 2008 . Toronto . Canada

The Canadian Breast Cancer Research Alliancegratefully acknowledges additional support for this meeting from the

Canadian Institutes of Health Research Institute of Cancer Research

through a Meetings, Planning & Dissemination Grant: Cancer Research

National Breast Cancer Research Summit | Table of Contents

Mapping The Future

Tab

Annotated Agenda

Participants List

Executive Summary

Key Findings

Worksheets

About CBCRA

Other

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Item

Annotated Agenda

Participants List

Executive SummarySynthesis of top breast cancer research priorities identified by CSO codes

IntroductionResultsPolicy Influencers’ Perspectives on Breast Cancer ResearchSummary Table

Breast Cancer Research Priorities:A Summary of a Survey of Organizations Funding Breast Cancer Research in Canada and Related Key Informant InterviewsPrefaceSummaryTable

Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast CancerSummaryTable

Canadian Breast Cancer Researcher PrioritiesSummaryTableState of the Research Reports: Early Detection Epidemiology/Prevention Knowledge Translation/Health Services/Policy/Ethics Molecular Biology and Signal Transduction Molecular Pathology Psychosocial Oncology Treatment and Clinical Trials Tumour Microenvironment and Metastasis

Canadian Breast Cancer Research System GapsSummaryAnalysis

Internationally Identified Breast Cancer Research PrioritiesSummaryTable

National Breast Cancer Research Summit | p 1

1. To develop the first cut of a national breast cancer research framework, including identification of: • Pan-Canadian research priorities for new or enhanced funding across the cancer continuum • Gaps and opportunities across the breast cancer research system • Principles to guide funding collaboration • Preliminary opportunities for collaborative activity among funders 2. To develop an initial approach to move the framework into action, consisting of: • Agreement as to how framework will be finalized, shared and refreshed • Discussion of possible contribution of CBCRA and other players.

• Shared commitment to the benefits of developing a national breast cancer research framework and agreement to work together. • A frank and open discussion of what it will take to achieve these desired benefits. • A compelling action agenda for making progress: plans for moving forward, agreed areas of focus, partnership opportunities, collaborations, new models.

1:00 – 2:00 p.m. Registration Refreshments available 2:00 – 2:30 p.m. Getting Started Welcome and introductions from Chair of CBCRA Board of Directors and Co-Chairs of the National Summit Mr. Leslie Cox, Drs. Moira Stilwell and Phil Branton2:30 – 3:30 p.m. Describing the Update on the breast cancer research opportunities that are being pursued International Context internationally with particular reference to the Top 10 list Presentation followed by Q&A Reference: International Section of Key Findings Chapter Speaker: TBD 3:30 – 5:30 p.m. Exploring the Canadian Create the platform from which to dream by appreciating the accomplishments to date. Context - Part 1 Opportunity for participants to get to know each other while reflecting on the factors leading to successful collaborations and to determine the elements of a national breast cancer research framework. Reference: Key Findings Chapter in pre-meeting materials Drs. Moira Stilwell and Jane Cooke-Lauder 4:00 – 4:30 p.m Break Health break with opportunity for networking 5:30 – 6:30 p.m Exploring the Canadian Delivery of a ‘state of the union’ report card on breast cancer research in Canada Context - Part 2 Presentation followed by Q&A Reference: Results Section of Key Findings Chapter Speaker: Dr. Kathy Pritchard6:30 – 7:30 p.m Dinner 7:30 – 9:00 p.m Daring to Dream In small groups and in plenary, participants will identify the longer term outcomes to be achieved by having a national breast cancer research framework in place Reference: Introduction of Key Findings Chapter in pre-meeting materials Drs. Moira Stilwell and Jane Cooke-Lauder9:00 p.m. Adjournment Location of Hospitality Suite will be announced

Agenda

Monday May 26, 2008

Desired Outcomes

May 26 - 27, 2008 . Toronto . CanadaZermatt Room, Sheraton Gateway Hotel

Pearson International Airport Terminal 3, Toronto

Annotated Agenda

National Breast Cancer Research Summit | p 2

7:30 – 8:00 a.m Breakfast 8:00 – 8:30 a.m Welcome Back Recap of the highlights from Day 1 Review of agreed outcome statements from the previous evening Drs. Phil Branton and Jane Cooke-Lauder8:30 – 9:45 a.m Daring to Dream Identification of the areas/opportunities that are seen as having specific potential in the (Continued) Canadian milieu, and those that require collaboration. Highlights from the data gathering: a brief presentation Small group work to identify research priorities that will have an impact/achieve the outcomes as defined Reference: Results Section of Key Findings Chapter in pre-meeting materials Dr. Moira Stilwell, Ms. Nicola Lewis, Dr. Jane Cooke-Lauder9:45 – 10:15 a.m Break 10:15 a.m. Defining Success and Discussion in plenary of: Creating the 1. The most compelling research priorities and the ones where there is interest in Necessary Conditions working together 2. The critical elements of the current breast cancer research system that will need to be in place in order for success to be achieved? Session Chair: Dr. Elizabeth Eisenhauer12:00 – 1:00 p.m. Lunch 1:00 – 1:45 p.m. Creating the Conditions Agreement as to the most useful principles to have in place to guide collaborative for Success (Continued) initiatives among funders. Combination of presentation, small group work and plenary discussion Reference: Introduction of Key Findings Chapter Dr. Jane Cooke-Lauder1:45 – 3:15 p.m. Developing Agreements Discussion on how to bring this first attempt at national planning to closure, monitor implementation/adoption and how to identify research priorities and opportunities to collaborate on an ongoing basis. Presentation of some initial ideas from CBCRA Small group work to identify action steps and roles and responsibilities moving forward Drs. Moira Stilwell, Barbara Whylie and Jane Cooke-Lauder3:15 – 3:30 p.m. Coming to Closure Call to action Drs. Moira Stilwell and Phil Branton3:30 p.m. Adjournment Mr. Leslie Cox

Tuesday May 27, 2008

Annotated Agenda

National Breast Cancer Research Summit | Participants List

Mapping The Future

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Participants List

Dr. Samuel AparicioHead, Molecular Oncology and Breast Cancer ProgramBC Cancer Research CentreMember, CBCRA Research Advisory CommitteeVancouver, BC

Ms. Julie BettneyBoard of DirectorsCanadian Breast Cancer Foundation, Atlantic RegionMount Pearl, NL

Ms. Barbara BoydSenior Director of FinancePepsi Bottling GroupMember-at-large, CBCRA Board of DirectorsMississauga, ON

Dr. Phil BrantonScientific DirectorCanadian Institutes of Health Research - Institute of Cancer ResearchMember, CBCRA Board of DirectorsMontreal, QC

Ms. Barbara CameronPatient RepresentativeAlberta Cancer BoardCalgary, AB

Dr. Svein CarlsenVice-President, ResearchSaskatchewan Cancer AgencySaskatoon, SK

Dr. Carol CassDirectorCross Cancer InstituteEdmonton, AB

Dr. Mario ChevrettePresidentThe Cancer Research SocietyMontreal, QC

Dr. Stephen ChiaChair, British Columbia Breast Tumour GroupBC Cancer AgencyVancouver, BC

The Honourable Mary Collins, P.C.DirectorBC Healthy Living Alliance SecretariatVancouver, BC

Ms. Krista ConnellChief Executive OfficerNova Scotia Health Research FoundationHalifax, NS

Dr. Jane Cooke-Lauder (Facilitator)President and CEOBataleur Enterprises Inc.Toronto, ON

Mr. Leslie CoxAvon CanadaChair, CBCRA Board of DirectorsSun City Center, FL

Ms. Mary-Jo DeCoteauExecutive DirectorReThink Breast CancerToronto, ON

Dr. Shoukat DedharSenior ScientistCancer Genetics and Developmental BiologyBC Cancer Research CentreMember, CBCRA Research Advisory CommitteeVancouver, BC

Ms. Linda EagenPresident and Chief Executive OfficerOttawa Regional Cancer FoundationOttawa, ON

Dr. Elizabeth EisenhauerPresident, Board of DirectorsNational Cancer Institute of CanadaMember, CBCRA Board of DirectorsKingston, ON

Ms. Jan EngemoenChief Executive OfficerCanadian Breast Cancer Foundation, BC/Yukon RegionVancouver, BC

Ms. Diana ErmelPresidentCanadian Breast Cancer NetworkMember, CBCRA Board of DirectorsRegina, SK

National Breast Cancer Research Summit | Participants List p 4

Dr. Mary Jane EsplenClinician Scientist, Behavioural Sciences & Health Research DivisionUniversity Health NetworkToronto, ON

Dr. Margaret FitchAssociate Scientist, Clinical EpidemiologySunnybrook Research InstituteToronto, ON

Ms. Colleen FlemingChief Executive OfficerCanadian Breast Cancer Foundation, Central OfficeMember, CBCRA Board of DirectorsToronto, ON

Ms. Sandra FuscoCommunity RepresentativeIle-Bizard, QC

Dr. Karen GelmonHead, Investigational Drug ProgramDepartment of Advanced TherapeuticsBC Cancer AgencyVancouver, BC

Ms. Pamela GoldbergChief ExecutiveBreast Cancer CampaignLondon, UK

Mr. Peter GoodhandChief Executive OfficerCanadian Cancer Society - Ontario DivisionToronto, ON

Ms. Susan GoodmanMember, CBCRA Research Advisory CommitteeToronto, ON

Dr. Pam GoodwinSenior Scientist, Samuel Lunenfeld Research InstituteDirector, Marvelle Koffler Breast CancerToronto, ON

Dr. Jane GreenProfessor, Discipline of GeneticsMemorial University of NewfoundlandMember, CBCRA Research Advisory CommitteeSt. John’s, NL

Dr. Eva GrunfeldDirector, Cancer Outcomes ResearchCancer Care Nova ScotiaHalifax, NS

Dr. Thomas HackAssociate ProfessorFaculty of NursingUniversity of ManitobaMember, CBCRA Research Advisory CommitteeWinnipeg, MB

Ms. Lois HarrisonDirector of Health Promotion and Grant AllocationCanadian Breast Cancer Foundation, Prairies/NWT RegionEdmonton, AB

Ms. Jessica HillChief Executive OfficerCanadian Partnership Against CancerToronto, ON

Ms. Carol HiscockBoard MemberCanadian Cancer SocietyMember, CBCRA Board of DirectorsWinnipeg, MB

Dr. Claire HollowayAssociate Scientist and Surgical OncologistSunnybrook Health Sciences CentreMember, CBCRA Research Advisory CommitteeToronto, ON

Dr. Tom HudsonPresident and Scientific DirectorOntario Institute for Cancer ResearchToronto, ON

Dr. Joy JohnsonScientific DirectorCanadian Institutes of Health Research - Institute of Gender and HealthVancouver, BC

Ms. Sherry JohnstonExecutive DirectorBreast Cancer Society of CanadaSarnia, ON

Captain Melissa KaimeDeputy Director, CDMRPUS Department of DefenseFort Detrick, Maryland

National Breast Cancer Research Summit | Participants List

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Dr. Eshwar KumarCo-Chief Executive OfficerNew Brunswick Cancer NetworkFredericton, NB

Ms. Roberta LaceyDirector, Communications, Public Relations, and EventsAvon CanadaMember, CBCRA Board of DirectorsMontreal, QC

Ms. Nathalie Le ProhonBoard MemberFondation du cancer du sein du QuébecWestmount, QC

Dr. Victor LingScientific DirectorTerry Fox Research InstituteVancouver, BC

Dr. Benoît LussierActing Executive DirectorCanadian Cancer Research AllianceMontreal, QC

Dr. Sylvie MaderProfessorInstitute for Research in Immunology and CancerUniversity of MontrealMember, CBCRA Research Advisory CommitteeMontreal, QC

Dr. Jacques MagnanInterim President and Chief Executive OfficerAlberta Heritage Foundation for Medical ResearchEdmonton, AB

Dr. Tak MakDirectorCampbell Family Institute for Breast Cancer ResearchToronto, ON

Ms. Jackie ManthorneExecutive DirectorCanadian Breast Cancer NetworkMember, CBCRA Board of DirectorsOttawa, ON

Dr. Katherine McKenzieManager: External Relations; Biomedical Research AdministratorCalifornia Breast Cancer Research ProgramOakland, CA

Dr. John McLaughlinVice-President, Population Studies & SurveillanceCancer Care OntarioToronto, ON

Dr. Anne-Marie Mes-MassonDirectorFRSQ Cancer Research NetworkMontreal, QC

Ms. Lori MesserNational PresidentCanadian Cancer SocietyToronto, ON

Ms. Dianne MooreDirector, Canadian Breast Cancer NetworkCommunity RepresentativeWindsor, ON

Ms. Cindy MoriartyActing DirectorBureau of Women’s Health and Gender AnalysisHealth CanadaOttawa, ON

Dr. William MullerCRC Chair in Molecular OncologyProfessor, Departments of Biochemistry and MedicineMcGill UniversityMontreal, QC

Dr. Leigh MurphyDirectorManitoba Breast Cancer Research GroupWinnipeg, MB

Dr. Tim MurphySenior Vice President, Corporate Services and ProgramsMichael Smith Foundation for Health ResearchVancouver, BC

Ms. Judy NeedhamCommunity RepresentativeLangley, BC

Dr. Benjamin NeelDirectorOntario Cancer InstituteToronto, ON

National Breast Cancer Research Summit | Participants List p 6

Dr. Maureen O’Connor-McCourtGroup Leader, Receptors, Signalling & ProteomicsNRC Biotechnology Research InstituteMontreal, QC

Dr. Ivo OlivottoChief Physician & Head of Radiation OncologyBC Cancer AgencyVancouver Island Cancer CentreChair, CBCRA Research Advisory CommitteeVictoria, BC

Dr. Morag ParkDirector, Molecular Oncology GroupMcGill University Health CenterIncoming Member, CBCRA Board of DirectorsMontreal, QC

Dr. Cathy PopadiukProfessor of MedicineMemorial University of NewfoundlandMember-at-large, CBCRA Board of DirectorsSt. John’s, NL

Dr. Kathy PritchardSenior ScientistSunnybrook Health Sciences CentreToronto, ON

Dr. Brent SchacterChief Executive OfficerCanadian Association of Provincial Cancer AgenciesWinnipeg, MB

Ms. Sharon SmithDirector of Cancer CareEastern HealthSt. John’s, NL

Dr. Moira StilwellCo-Medical Director of Breast HealthBC Women’s Hospital and Health CentreMember, Canadian Breast Cancer Foundation National BoardMember, CBCRA Board of DirectorsVancouver, BC

Dr. Michel TremblayDirectorMcGill Cancer CentreMontreal, QC

Ms. Theresa Marie UnderhillChief Operating OfficerCancer Care Nova ScotiaHalifax, NS

Ms. Lianne VardyDirector, Chronic Disease Management DivisionPublic Health Agency of CanadaMember, CBCRA Board of DirectorsOttawa, ON

Ms. Linda VenusVice-Chair, CBCRA Research Advisory CommitteeWinnipeg, MB

Dr. Barbara WhylieChief Executive OfficerCanadian Cancer SocietyMember, CBCRA Board of DirectorsToronto, ON

Ms. Sharon WoodChief Executive OfficerCanadian Breast Cancer Foundation, Ontario RegionMember, CBCRA Board of DirectorsToronto, ON

Dr. Michael WosnickExecutive DirectorNational Cancer Institute of CanadaMember, CBCRA Board of DirectorsToronto, ON

Dr. Martin YaffeSenior ScientistSunnybrook Health Sciences CentreToronto, ON

CBCRA Secretariat

Ms. Nicola LewisExecutive Director

Dr. Pascale MacgregorResearch Program Director

Ms. Janet PattersonCommunications Manager

Ms. Susan WallCo-ordinator, Conferences and Meetings

Ms. Pat McAulayProgram Administrator

Ms. Megan GaucherProgram Assistant

National Breast Cancer Research Summit | Executive Summary

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Executive Summary

IntroductionStakeholders agree to the importance of developing a national breast cancer research framework at this time. While significant advance-ments in breast cancer research, screening and treatment have been achieved and incidence and mortality rates continue to decline, female breast cancer rates in Canada remain amongst the highest in the world1.

The partners of the Canadian Breast Cancer Research Alliance (CBCRA) have invited some 70 breast cancer leaders – funders, survivors, policy influencers, researchers, community advocates - as well as influential international guests, to gather in Toronto on May 26 and 27, 2008. The purpose of this National Summit is to develop a shared vision of a pan-Canadian breast cancer research framework that will anticipate and be responsive to new scientific opportunities and challenges, and improve co-ordination of breast cancer research efforts.

In anticipation of this event, CBCRA commissioned several background data gathering projects to level the playing field in terms of knowl-edge of current breast cancer initiatives. Input has been solicited from researchers, policy influencers, survivors and funders on a number of topics germane to the future of breast cancer research. They were asked to identify research priorities, comment on the overall ‘health’ of the breast cancer research system, indicate what was needed in a national framework and opine on who needs to be involved in its devel-opment. Results of these conversations are presented, briefly, below. More information is available in the sections following in this binder. The full reports and other related information is available on the CBCRA website (www.breast.cancer.ca).

Creating the National Breast Cancer Framework Global complementarity is one of the requirements for a Canadian national framework. Stakeholders are clear. They are looking for a visionary plan that creates the opportunity for Canada to become known as an international player in a number of new areas, building off acknowledged existing strengths. They are also looking for a plan that does not duplicate what is being done abroad, but rather has a unique ‘Canadian’ flavor to it. The plan must also not ‘tell others what to do’. It should describe a minimal and an optimal level – providing opportunity to collaborate but not force fitting a strategy onto any other organization. Stakeholders are also expecting the framework to be focused on clear goals and, to have measurable outcomes, while also demonstrating the case for further excellent research and research funding.

Initial data gathering efforts to identify recent breast cancer research prioritization initiatives in other jurisdictions resulted in learnings about international, UK and US projects occurring within the last 18 months. Further information about these is included in the binder – and a plenary session at the Summit has been dedicated to helping all participants better understand some of the international strengths and gaps as an important backdrop to the development of the Canadian framework.

Stakeholder PrioritiesIncluded in this binder are summaries of the current breast cancer research issues that are of concern to stakeholders. The binder materials provide participants with recent insights, areas of consensus and of disagreement in order to level the playing field of knowledge coming into the Summit. All participants, regardless of their backgrounds, will have had the opportunity to hear the voice of stakeholders through this data. Conversations at the Summit are designed to build off this awareness to arrive, through engagement and dialogue, at some consensus around a small number of focus areas.

Summaries of these data gathering exercises are available in the binder, together with summary tables and a link to the full report on the website. What follows are the highlights of each together with the highest level analysis of the data. This analysis is presented in table format, titled Synthesis of Top Breast Cancer Research Priorities Identified by CSO Codes, and provides a ‘snapshot’ overview of the con-solidated dataset. Within the overall organizing framework of the Common Scientific Outline (CSO), the following information is provided: •LinkagestotheCancerControlContinuum(Column1) •FundingsourcesandthescaleoffundingbyCSOcategory(Column2) •WithintheCSOcategory,theprioritizedCSOcodesarelisted(basedonadetailedanalyticalexercise)thatappeartobemost favoured by all stakeholder groups (Column 3) •Examplesofthetypesofissuesandresearchquestionsidentifiedbystakeholdersarethenputforward(Column4) •Thefinaltwocolumnsincludeinformationidentifyingwhichstakeholdergroupprioritizedthecode(Column5),andlastlythe relevant international priorities corresponding to the prioritized CSO code are listed (Column 6).

1 Canadian Cancer Statistics, 2007

National Breast Cancer Research Summit | Executive Summary p 8

Highlights from the ResearchersThe results from two separate data gathering initiatives have been used to identify researcher priorities: the workshop held by CBCRA in December, 2006 and the Summit hosted by NCIC in May, 2007. Both initiatives had input from a group broader than researchers but the predominant attendees and sources of information were the researcher group. NCIC used a key informant interview approach to identify themes (breakthroughs, barriers and immediate opportunities) that were presented at the workshop. CBCRA requested acknowledged leaders in eight different research areas to produce ‘state of the research’ overviews and conducted an international scan of breast cancer funding agencies.

NCIC’s participants included a higher percentage of clinicians. Not surprising, the priorities identified focused on screening, prevention and treatment, but also acknowledged the importance of biological and system modeling research. Participants at the CBCRA workshop reached consensus around 19 priorities (listed in the Key Findings section under researchers). Areas of commonality across the two data sets include: •Biomarkers;targetedandtailoredtreatment •Improvedscreeningtoolsandprograms •Knowledgetranslation •Riskreduction/prevention •Metastaticbreastcancer •Survivorshipandpsychosocialinterventions •Considerationofmarginalizedandsub-populations.

Highlights from the Policy Influencers15semi-structured,telephonicinterviewswereheldwithindividualseithersettingorinfluencingpolicyrelatedtobreastcanceratdifferentlevels and in different jurisdictions across Canada.

Their issues and interests cluster logically into the following key areas: •Etiologyandtryingtofindacure •PreventionandEarlyDetection:intheabsenceofacure,afocusonpreventingandparticularly,screening •DeliveryofHealthCareandtheassociatedcost:includedinthisclusterisknowledgetranslationandcommunication.Policy influencers are also interested in learning more about complementary and alternative approaches.

Policy influencers strongly support the need for a national breast cancer research framework. They see value in bringing the different actors together to facilitate better understanding across the system and better coordination of actions. They also support an inclusive approach to thedevelopmentoftheframeworkandtheinvolvementoforganizationssuchasCBCRA,CCRA,CIHR,PHAC,CPACandCAPCA.Intermsoftheir own role and changes to the research system, there is a strong call for a ‘regularization and formalization’ of interaction among policy influencers, researchers and stakeholders.

Highlights from the Survivors808 responses were received to a bilingual web-based survey developed based on existing literature and expert input, and tested rigor-ously prior to launch with survivors. There are some limitations to the data in that respondents were of a younger age than the norm in thepopulation.However,statisticaltestsdemonstratenodifferencesinopinionsaccordingtotheagecategoryoftherespondent.Therearesomesmallregionaldifferencesinthedata(e.g.,Englishlanguagerespondentsgavehigherratingstoriskfactorsandpreventionthantheir French language counterparts who rated treatment more highly) as well as some similar small differences based on the respondent’s experience with breast cancer.

The predominant focus for this stakeholder group is on prevention, screening and treatment. They are also concerned about health system andserviceissues(forexample:issuesofwaitingtimes;coordination/integration;financialbarriers;supplyofqualifiedpeople;widevaria-tioninprotocolsandqualityofservices;significantchallengesinrural/remoteareas;theknowledge;andcommunicationskillsofphysi-cians and other professionals working with women going through the trauma of the diagnostic and treatment experience). Specific areas of special concern include:

National Breast Cancer Research Summit | Executive Summary

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•Thebroadtopicofbreastcancerandyoungerwomenwithinthecategoriesofprevention,screening,treatment,supportive care,andhealthservices/systems. •Theimportanceofresearchonmetastaticcancer •Theissueofpsychosocialandothersupportsneededbefore,duringandaftertreatment •Moreresearchintoenvironmentalcausesandriskfactors. •Moreresearchonawiderangeofalternativeandcomplementarytreatmentapproaches.

With respect to breast cancer research and research funding, participants voiced their appreciation for work done to date but many also expressed the need for more collaboration and sharing of information among researchers. A small but notable minority also voiced concern about the slow progress on many important issues and the need to focus research efforts.

Highlights from the FundersIn2006,atleast$49.5M(12%ofthetotalfundingincancerresearch)wasinvestedinbreastcancerresearchastrackedbyCCRA.MoniesassociatedwithsuchfundraisinginitiativesastheWeekendtoEndBreastCancerarenotincludedinthisfigure.Thefocusofthefundingispredominantlyintheareaofbiology(40%)withetiology,earlydetection,treatmentandcancercontrolsurvivorshipandoutcomeseachreceivingabout15%oftheavailablefunds.Some2%isspentonpreventionresearch.

Twocomplementarydatagatheringapproacheswereusedtoobtainfunderinput:aweb-basedsurveywhichreceiveda35%responserate, supplemented by 13 key informant interviews. The stratified interview sample was created based on a selection of leaders in breast cancer funding agencies across the spectrum: national, provincial, research institutes, cancer care agencies and cancer foundations.

Currentprioritiesforfundersinclude:riskfactorsandprevention,treatment,developingresearchcapacityandlaboratory/basicresearch.In rating the previously identified 19 priorities (see researcher section), their highest priorities are biomarkers, metastases and knowledge translation.Theyarealsoconcernedabouthealthcaredelivery.Theiremergingprioritiesand/orareasofconcerninclude:geneticsrelatedresearch, the impact of environmental risk factors, increasing the amount of translational research and expanding the focus on metastasis-related research.

Most funders have some experience with collaboration. Thoughtful suggestions were put forward with respect to building successful col-laborations that could provide guidance to the development of a set of collaboration principles moving forward.

77%ofthefunderssupportthedevelopmentofthenationalbreastcancerresearchframework,withaparticularrequestthattheframe-work is positioned within a global context. They expect it to be comprehensive, while providing sufficient specificity and clarity of direction. Including a knowledge translation component is described as being a priority.

Identified gaps to be addressed in the research system in order to facilitate the delivery of world-class breast cancer research include: fundingformulti-disciplinaryteams;increasingthenumberofteamgrants;increasingthenumberofclinician/scientistsanddevelopingbreast cancer research leaders.

System gap analysisStakeholders were asked what is needed to change about the current way breast cancer research is funded, resourced, planned, taught, communicated, monitored, and evaluated in order for Canada to become more internationally competitive. Identified gaps include making changes to some of the ways research is funded, improving accessibility to tumor banks and finding ways to move research findings into practice more quickly and more efficiently.

Pulling it all TogetherInformation provided in this binder will be used to inform discussions during the Summit. Plenary and small group sessions will be sup-ported by the rich set of perspectives included here – and will build off these foundational stakeholder views. What we have to-day are identified priorities – developed by thoughtful concerned individuals. Through the Summit process, we expect to translate these into a few agreed areas for action. Specifically, the Summit agenda calls for participants to review these materials and come prepared to share their perspectives on the future of breast cancer research in Canada, including the kinds of outcomes that need to be achieved that will differentiate Canada from other nations, build on our strengths and maximize Canada’s contribution to reducing the global impact of breast cancer.


Mapping The Future

CSO Category (1) and corresponding Cancer Control Continuum categories (2)

Level of Funding for Category* and Known Funders (>$100k) Prioritized CSO Code (3)

Listing of Stakeholders prioritizing this Code

Examples of Identified Research Issues/Questions (4)

International Linkages (5)

(I): Top 10 Priorities(II): Recommendations from UK Gap Analysis(III): CBRP Initiatives

Synthesis of Top Breast Cancer Research Priorities by CSO Code

1 2 3 4 5 6

Policy Influencers’Perspectives on Breast Cancer Research

CSO Code³


1. Biology

*Prevention*Diagnosis*Treatment

40%BCCACBCRACIHRTFF/NCICCCS/NCICCBCF Fondation du cancer du sein du QuébecFRSQNRCOICRSaskatchewan Cancer AgencyThe Cancer Research Society

1.4 Cancer progression and metastasis Researchers: SRAW, NCIC SummitSurvivorsFunders

• Early detection of metastasis disease, if oligometastatic disease is treatable with curable intent • Does the ability to metastasize develop during growth at the primary site?

• Tumor dormancy

• Risk/prevention of recurrence; why recurrence after 5 years?

• Finding new ways to ensure that cancer that spreads to other parts of the body is found early

(I) DCIS to progression: determine the factors in DCIS and/or ADH leading to progression into invasive carcinoma (I) Gene mutations responsible for metastasis: investigate which gene mutations in a cancer lead to metastases

(II) Gain a greater understanding of the genetic changes that occur within atypias and DCIS (theme #2 Initiation of breast cancer) (II) Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer)(II) Develop methods for easy, reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer)(II) Increase research efforts into the role of the tumour microenvi-ronment and the immune system in the development and treatment of breast cancer (theme #4 Thera-pies and targets in breast cancer)


Mapping The Future








1 2 3 4 5 6

7. Scientific model systems


1%CBCRA

7.1 Development and characterization of model system

Researchers: SRAW• Animal models of BC progressionBreast cancer modeling

(II) Improve preclinical models (Generic needs #1)(II) Cross-disciplinary working (Generic needs #3)(II) Develop three-dimensional cell culture models, containing multiple cell types, which reflects the tissue architecture of the normal and diseased breast (theme #2 Initiation of breast cancer)(II) Generate better animal models, particularly for ER-positive tumours, in which gene expression can be manipulated in all cell types of the mammary gland and will not be altered by transdifferentiation or dedifferentiation (theme #2 Initiation of breast cancer)


Mapping The Future








1 2 3 4 5 6

2. Etiology

*Prevention*Diagnosis

3. Prevention

*Prevention*Treatment

4. Early detection, diagnosis and prognosis

*Screening

15%CBCRACIHRFondation du cancer du sein du QuébecCBCFTFF/NCIC

2%CBCF

13%CBCRACBCFCIHR

2.1 Exogenous factors inthe Origin and Cause of Cancer

3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk3.2 Nutritional science in cancer prevention3.3 Chemoprevention

4.1 Technology development and/or marker discovery4.2 Technology and/or

Researchers: SRAW,NCIC SummitSurvivorsPolicy makersFunders

Researchers: SRAW, NCIC Summit, Vision 2020 BCSurvivorsPolicy makersFunders (Prevention a Current Priority with Environmental causes seen as an Emerging Priority)

Researchers: SRAW, NCIC Summit, Vision 2020 BCSurvivorsFunders (Early Detection a

Exposure to risk factors: biomarkers of exposure to risk factors (environment) through long term cohort studies

• How the food we eat, body weight and exercise relate to the risk of breast cancer• Why is breast cancer among young women/pre-menopausal increasing? • What are the key causes of breast cancer generally across the population and within certain cultural groups?

• Lifestyle influence on breast cancer: How do nutrition/lifestyle/natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level, including in sub-populations?• Exposure to risk factors: biomarkers of exposure to risk factors (environment) through long term cohort studies• Clinical prevention trials in genetically high risk women • Behavioural interventions to reduce risk• What population-based interven-tions can be introduced to reduce breast cancer incidence?• Pharmaco prevention

• Biomarkers: identification of the molecular basis/biomarkers of progres-sion, to target therapies or imaging and to understand and predict progression• Breast cancer subtypes: better appreciation of the functional

(III) Ethnic, racial and other disparities in breast cancer incidence and survival(III) Intersection of multiple factors that impact breast cancer

(II) Improve risk prevention models (theme #6 Prevention of breast cancer)(II) Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer)

(III) Environmental links to breast cancer(III) Ethnic, racial and other disparities in breast cancer incidence and survival(III) Intersection of multiple factors that impact breast cancer

(I) Molecular signatures: Identifica-tion of molecular signatures to select patients who could be spared chemotherapy


Mapping The Future








1 2 3 4 5 6

4. Early detection, diagnosis and prognosis (cont.)

*Treatment*Diagnosis

NRCOICRTFF/NCIC

marker evaluation with respect to fundamental parameters of method4.3 Technology and/or marker testing in a clinical setting

current priority with Genomics seen more as an Emerging Priority)

meaning of breast cancer subtypes (e.g., “triple negative” breast can-cer) and implications breast cancer progression and for treatment across populations • Lifestyle influence on breast cancer: How do nutrition/lifestyle/natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level?

• Better screening tools, including for genetically high risk women

• Advances in basic research

• Molecular imaging

• Alternative detection methods such as serum-based markers

(I) Optimal chemotherapy: Identify molecular features which indicate the optimal chemotherapy regimen (eg combination or sequential; anthracyclin or not; taxane or not)

(II) Improve preclinical models, research reagents and technologies (including imaging) (theme #3 Progression of breast cancer)(II) Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer)(II) Design innovative trials and translational studies to develop and evaluate predictive and prognostic markers (theme #5 Disease markers in breast cancer)(II) Develop close multidisciplinary collaboration with high-quality histopathology and rigorous scientific assessments to validate new markers important for patient outcome (theme #5 Disease mark-ers in breast cancer)(II) Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer (theme #5 Disease markers in breast cancer)


Mapping The Future








1 2 3 4 5 6

5. Treatment

*Treatment

15%CBCRACIHRCBCFBCCACCS/NCICNRCOICR

5.1 Localized therapies: discovery and development5.2 Localized therapies: clinical ap-plications5.3 Systemic therapies: discovery and development5.4 Systemic therapies: clinical ap-plications

Researchers: SRAW, NCIC Summit, Vision 2020 BCSurvivorsFunders (Targeted therapies and Ge-nomics seen as Emerging Priorities)

• Microenvironment of metastatic breast cancer: therapy for metastatic breast cancer targeted at interaction between tumor and its microenviron-ment

• BC subtypes: better appreciation of the functional meaning of breast cancer subtypes (e.g., “triple negative” breast cancer) and implications for treatment across populations

• Phase I and II intervention trials: fo-cus on multi-centre Phase I and II trials to test novel paradigms for intervention

• Advances in basic research

• Defining what patients need what therapies: more targeted and more tailored interventions• Advances in basic research

• Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer)

• Research into triple negative breast cancer

• Research on new therapies (such as vaccines and gene therapies) and new surgical and radiation treatments

(I) Triple negative breast cancer: Iden-tify response/resistance mechanisms and thereby therapeutic targets for triple negative breast cancer(I) No adjuvant therapy : Identifying which low risk patients require NO adjuvant therapy(I) Endocrine resistance: Identify drugable targets that can be devel-oped/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance


Mapping The Future








1 2 3 4 5 6

• Research on hormonal therapy (such as tamoxifen)

5. Treatment (cont.) (II) Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer)(II) Develop methods for easy, re-producible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer)(II) Increase research efforts into the role of the tumour microenvi-ronment and the immune system in the development and treatment of breast cancer (theme #4 Thera-pies and targets in breast cancer)(II) Identify robust markers of resis-tance or sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer (theme #5 Disease markers in breast cancer)(II) Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer


Mapping The Future








1 2 3 4 5 6

6. Cancer control, survivorship and outcomes

*Supportive care*Palliative care

And across complete CCC for codes 6.4 and 6.5

14%CIHRCBCRACBCFCCS/NCICFRSQ

6.1 Patient care and survivorship issues6.4 Cost analyses and health care delivery6.5 Education and communication

Researchers: SRAW, NCIC Summit, Vision 2020 BCSurvivorsPolicy makersFunders (Translational research and Evaluation of Supportive Care described as Current Priorities with Health Services/New Models seen more as an Emerging Priority)

• KT interventions : knowledge trans-fer: increase knowledge about interventions, what works, what doesn’t, studies of uptake and ef-fectiveness on the interventions where evidence exists

• Survivorship and Quality of Life intervention research: better understanding of issues and design of interventions

• Support across the course of the disease, including post-treatment complications (e.g., pain, lymphedema), stress management, mental health and reintegration issues, body image, self-esteem, for patients and their family/caregivers

• Studying the social influences on behaviour related to breast cancer

• Financial issues/aid (e.g. child care; employment insurance)

• Health care delivery: how is care currently being delivered? Are we doing the things we ought to do? Need for more coordination or communica-tion between players and in hospitals; more clinical teams and less individual physicians (fewer opportunity for mis-takes; opportunity for second opinion)

• Research into plans and policies that will ensure there are enough trained health care professionals for treatment and support

• Inequities: inequities and social determinants, equitable access to anticancer drugs across the country

(II) Develop and rigorously evaluate appropriate psychosocial interventions (theme #7 Psychosocial aspects of breast cancer)(II) Encourage cross-specialty collaborations to incorporate psychosocial issues and psychological theory (for example psychological theories in relation to behaviour change are relevant to those researching preventative lifestyles including diet and exercise) (theme #7 Psychosocial aspects of breast cancer)(II) Ensure research gives greater attention to all stages of breast cancer and that the needs of older women and those from a range of ethnic groups are included (theme #7 Psychosocial aspects of breast cancer)


Mapping The Future








1 2 3 4 5 6

• What is the ranking in terms of cost-effectiveness of new technologies relative to the most broadly used current technologies?• What population-based interven-tions can be introduced to increase percentage of women screened?• Research on wait times and their physical and psychological impact on the patients• What are the benefits and risk associated with genotyping?• What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer? What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best be reduced?• What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdictions? What would be the best strategy for developing assessment and evaluation protocols?• Within an integrated population-based approach to reducing cancer or chronic disease, what niche activities related to breast cancer specifically are still required?• Effective messaging about personal risk reduction• Education of the public about the disease, prevention and its risk factors, particularly for young and pre/meno-pausal women• Knowledge level of health care professional (e.g. teach basic facts detection methods, risks for young women, alternative therapies)

Mapping The Future


(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)

(2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.

(3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details. The codes listed in this column are the ones considered to be the most important by all stakeholders, relative to the other codes in that category.

* According to CCRA 2005 data (total $37.5M, which does not include Weekend to End Breast Cancer funding recipients and some provincial and federal funding agencies (e.g., SSHRC, Genome Canada)

(4) This column lists some examples of the type of research question/issues that stakeholders consider most important to address in that category.

(5) This column cross references the themes and priorities identified in three international studies: (i) International web-based consultation on priorities for translational breast cancer research (“The Top Ten Priorities”), (ii) Evaluation of the current knowledge limitations in breast cancer research: a gap analysis (“The UK Gap analysis”) and (iii) Identifying gaps in breast cancer research: Addressing disparities and the roles of physical and social environment (“The CBCRP Initiatives”), against the CSO codes selected by the stakeholders consulted for the present report.


National Breast Cancer Research Summit | Key Findings | Results

Mapping The Future

p 20

Introduction

Why does Breast Cancer Research Continue to be Important?Female breast cancer rates in Canada are amongst the highest in the world1. In every adult age group, breast cancer is the most common female cancer, accounting for over 30% of all new diagnoses in women aged 20-49 and 50-69, and 20% among older women. It is the leading cancer cause of death in young women, and ranks second and third, respectively in older ages.

Breast Cancer in Females, CanadaSummary statistics 2007 (estimates) Number of new cases 22,300 Incidence rates 104 per 100,000 % of all cancers in females 29% Incidence rank in females 1* Number of deaths 5,300 Mortality rate 23 per 100,000

* Excluding non-melanoma skin cancer

One in 9 women is expected to develop breast cancer during her lifetime. One in 28 will die of it. On average, 431 Canadian women will be diagnosed with breast cancer and 102 Canadian women will die of breast cancer every week. In 2008, an estimated 22,400 women and 170 men will be diagnosed with breast cancer. Out of these estimated figures, 5,300 women and 50 men will die of it. It is a daunting picture. While incidence and mortality rates have continued declining in all ages combined and in every age group, likely as the result of the uptake of screening mammography and the use of more effective adjuvant therapies following surgery, there are many questions that remain unresolved.

Why a National Summit?As a leader in breast cancer research in Canada, the Canadian Breast Cancer Research Alliance (CBCRA) represents researchers, funders, breast cancer survivors and other interested parties from the public, private and non-profit sectors committed to finding ways to prevent breast cancer, improve survival, and enhance the lives of those affected by the disease. Since its inception in 1993, CBCRA has awarded $162 million to 488 breast cancer research initiatives covering a broad range of topic areas.

Breast cancer research in Canada is at an important crossroads. While leading edge work is underway across the country, there has never been a more important time to meet as a community to determine a more strategic and efficient pathway to success. The National Summit on Breast Cancer Research has the potential to achieve this goal. As a forum of leaders, it will be a source for valuable input and thought-provoking discussion surrounding development of a much needed national breast cancer research framework. The framework, once fully implemented, will facilitate the sharing of meaningful information and result in more effective anticipation of and response to scientific opportunities.

The Summit is also a critical component of CBCRA’s strategic review and planning process, opening the door to a broad and inclusive consultation process that will shape its future role and contribution to Canada’s breast cancer research community as “the voice and action of breast cancer” in this country.

What is the Summit?The Summit presents an unprecedented opportunity for Canada’s key breast cancer research stakeholders to meet to discuss issues, es-tablish priorities, identify synergies, and set a clear, common framework for future breast cancer research initiatives. It will mark a turning point for breast cancer research in Canada, bringing funding leaders and other breast cancer community stakeholders together to create a shared vision for a national breast cancer research framework and inspire a more open and collaborative way of working together. It will also provide a window onto sources of funding for research scientists and provide a seat at the table for all stakeholders, in the development of a national framework.

Invited Summit participants include representatives from cancer care agencies and foundations, NGOs with a mandate in cancer research,

1 All statistics taken from Canadian Cancer Statistics, 2007: produced by CCS, NCIC, Statistics Canada, provincial/territorial cancer registries, and the Public Health Agency of Canada.

Introduction

National Breast Cancer Research Summit | Key Findings | Results p 21

provincial and federal funding organizations, health research agencies and research institutes, researchers, policy-makers, survivors and breast cancer community leaders at both the national and regional levels.

What is the Purpose of the Summit?The Summit is geared toward the development of a national breast cancer research framework that will anticipate and be responsive to new scientific opportunities and challenges and improve co-ordination of breast cancer research efforts in Canada, maximizing synergies and reducing duplication. Three expected outcomes of the Summit have been identified: 1. There is a shared commitment to the benefits of developing a national breast cancer research framework and agreement to work together 2. A frank and open discussion has taken place of what it will take to achieve these desired benefits; and 3. A compelling action agenda for making progress has been agreed, including such elements as: plans for moving forward, agreed areas of focus, partnership opportunities, and collaboration principles.

What Will Happen After the Summit?The Summit’s success will be assessed by the ability of the group to share information and be open to new models of collaboration. It is hoped that the participants will also commit to moving the proposed national framework into action.

Moving forward, CBCRA’s objective will be to support the decisions made at the Summit and to encourage and facilitate the identified priorities for breast cancer research in Canada, maximizing synergies and reducing duplication. To that end, the outcomes of the Summit, together with an extensive governance review that is underway, will inform the CBCRA Board of Directors in the development of the five-year strategic plan (CBCRA-Vision 2015). The Summit discussions will also help to clarify the role and voice of the Alliance as Canada’s co-ordinator of national breast cancer research efforts.

Summit proceedings will be posted on the CBCRA website.

What are the Benefits of a National Research Framework?Most stakeholders consulted expressed support for the creation of a national breast cancer research framework. Benefits identified include the value of creating a unique Canadian focus, on tackling projects that are bigger than any one funder, better overall deployment of resources, and less duplication. Further, the view was expressed by funders that donors are coming to expect collaborative efforts – they want to know that “there is effective coordination or communication between the different kinds of research going on in this country.”

There were some concerns expressed about the initiative. Reassurances were sought that the role of the individual researcher will not be overlooked in a rush to develop large projects and large teams or that the initiative would turn into merely a coordination exercise – for it to have value, stakeholders emphasized it must be “greater than the sum of all of the parts”.

What Might be Included in a National Breast Cancer Research Framework?Stakeholders were asked what would need to be included in the national framework for it to have credibility. In establishing some over-arching principles, they indicated that the Framework needed to be: •Comprehensiveandbalanced •Adaptabletoemergingpriorities;retainitscurrency •DemonstratingauniqueCanadianniche,positionedstrategicallywithresearchbeingconductedinothercountries •Nationalandregionalinscope •Identifyingminimalandoptimum:nottellingotherswhattodo •Demonstratingthecaseformoreexcellentresearchandmorefundingofresearch •Focusedongoalsandaccountability;measurableoutcomes •Demonstratinghowduplicationsandoverlapsinadministrationwillbeminimized •Identifyingtheenablingstructuresrequired.Specific areas of focus for research were also suggested2, including: •Screening/earlydetection •Knowledgetranslation •Healthservices •Cancergenetics •Cancerbiology.

2 Note: This list is not meant to be comprehensive, merely exemplary of the type of content that stakeholders believe should be included in a national framework.

Introduction


Mapping The Future

p 22

Diverse opinions were shared as to the optimal process for creating such a framework with some favouring an inclusive consultative approach and others a ‘dream team’ expert based model. In fact, in developing the proposition, every attempt has been made to marry both processes to ensure engagement as well as strong content.

Are Other Jurisdictions Concerned about Breast Cancer?In the last couple of years, forward looking individuals and organizations in Europe and the US have initiated strategic projects designed to build momentum in breast cancer research. Captured in these pre-reading materials are the key messages from four such initiatives:

1. The largest recent international initiative designed to identify research priorities with input from researchers across the globe. What have become known as the “Top 10” or the St Gallen Research Priorities were issued in March, 2007 2. ArigorousnationalinitiativeundertakenintheUnitedKingdomoverthelastcoupleofyearsidentifiedresearchgapsand published (March 2008) recommendations in seven themes including: genetics, initiation, progression, therapies and targets, disease markers, prevention, and psychosocial aspects 3. The California Breast Cancer Research Program (CBCRP) has identified research priorities related to the role of the environment and disparities, as well as the intersections of multiple factors that impact breast cancer. They issued a funding announcement for nine new initiatives in April, 2008 4. A Collaborative Summit on Breast Cancer Research, hosted in Virginia by key funding agencies like the Avon Foundation, TheBreastCancerResearchFoundation,SusanGKomenfortheCureandattendedbysome100invitedparticipants:(funders, advocates, government agencies and scientists from academic institutions and the pharmaceutical industry) led to the identification of a number of key action items, including the establishment of a National Breast Cancer Planning Committee and the commitment to being more transparent in sharing information and reporting to the public. See http://www.fnih.org/news/breast_cancer_summit.shtml for details.

Within Canada, similar momentum is being experienced. CBCRA held a Strategic Research Agenda Workshop in December 2006. Proceedings are available on the CBCRA website (www.breast.cancer.ca) and the outcomes of the workshop are discussed later in this section under the heading Summary of Canadian Breast Cancer Researcher Priorities. The results of the Summit hosted by the National Cancer Institute of Canada (NCIC) in May 2007 were also used to inform the researcher results write-up. A multi-stakeholder workshop was convened in Vancouver in the spring of 2007 by the BC/Yukon Region of the Canadian Breast Cancer Foundation (CBCF). “Vision 2020 - Imagine a future without breast cancer” included in its proceedings five priorities for action related to prevention, the health care workforce, early detection, treatment and research. Proceedings are available at www.cbcf.org/en-US/BC%20Yukon/Our%20Chapter%20in%20Action.aspx.

What Will it Take to be Successful?Canada has much off which to build. A number of national breast cancer research assets were mentioned during the data gathering process. Canada has great strength in its individual researchers. The universal health care system which includes the use of fairly uniform treatment protocols, together with the multiculturalism of Canada are seen as distinct advantages. Of international renown is the NCIC Clinical Trials Group. Canada is seen as exceptionally strong in the biomedical area, for example, cancer genetics such as the Human Genome project and cancer biology. The Letrosol trial is another example of Canadian excellence where research findings changed clinical practice almost immediately. Some areas where Canada has the potential to become world renowned include: survivorship research, prevention research, population/cohort studies, the use of telemedicine and telehealth, research into environmental issues that increase risk and gene interaction.

Moving the Plan through to successful execution will require commitment from the funding parties, individuals and organizations with the passion, time and energy to move a national agenda forward. Flexibility and adaptability, with strong accountability will be needed. Col-laboration among the funders will be a further requirement given that they will need to work together in new and different ways.

3 For additional information, see http://www.toptenresearch.org/index.html - The full text article url is at: http://breast-cancer-research.com/content/9/6/R81

4 The report on this initiative is entitled “Evaluation of the current knowledge limitations in breast cancer research: a gap analysis”, A. Thompson et al. Breast Cancer Research, 2008, 10:R26 identified research gaps. The full text article is at http://breast-cancer-research.com/content/10/2/R26

5 For additional information, see http://www.cabreastcancer.org/media/pr/041008.php

Introduction


If Collaboration Among Funders is Key, Is there Any Appetite among Funders to Play?Thedatagatheredindicatesthatfunders,onthewhole,areinterestedincollaboratingtofundexcellentscience.Keyinformantsandsur-vey respondents indicate experience with collaboration (most typical areas are prevention and knowledge translation) – and based on that track record, identify that while collaboration can have enormous benefits, it is not without its challenges. In particular, funders identify the following critical success factors: • Developasharedsenseofpurposetheearlier,thebetter–asenseofpurposethatcanbedescribedashavingalargewinfor the country; included in the sense of purpose should be what the group effort will accomplish that couldn’t be done individually. Establish ‘ambitious’ programs and don’t ‘smatter’ funds for the sake of pleasing everyone • Fewerpartnersmaketheprocesseasier • Findpartnerswithcomplementaryorcompatibleoperatingstyles • Applythefundinginagreedvalue-addedways • Establishclearaccountability,roledefinitionandsharedownershipoftheagenda • Identifyaleadpartnerwhocanhelporchestratetheactivitiesofthecollaborationandbringcohesiontoitsactivities • Remembertoevaluate,activelymanagetheriskandtocelebrateresults.

What Pre-Reading Materials are Provided?In order to provide a common set of data to all participants, CBCRA engaged in a comprehensive data gathering exercise to bring to the Summit, the views of researchers, policy influencers, survivors, and funders. Based on agreement as to the core information being sought, tailored data gathering approaches were developed and implemented over the past six months. The result is a rich and diverse data set, some of which is presented in this binder (the summaries) and others of which is available on CBCRA’s website (the full reports).

Following this introductory chapter, a comprehensive summary of research results is provided. Research priorities have been identified by each of: • Policyinfluencers • Fundingorganizations • Survivors • Researchers,and • Internationalinitiatives.

The approach used is to present some background on the data gathering process, including some detail on the methodology, and an overview of the results. A summary table designed to capture the identified research priorities and organized by Common Scientific Outline (CSO) category, is also provided in each section. One cross cutting summary is included, focusing on the gaps and changes required to the current research system if this national research framework is to be implemented successfully.

Preceding this chapter is an Executive Summary and Summary Table. Both are critical documents. The data gathering findings are described in the Summary in the simplest way possible. The summary table was developed based on an extensive review and analysis of all the findings. It presents – by CSO code, within each of the CSO categories, the priorities identified across all stakeholder groups. Included in the table are also examples of possible research questions, the related international priorities, and a listing of the current funding agencies with a track record of investing in that specific CSO category.

Rounding out the contents of the binder is a list of definitions and some background material on CBCRA. Note that there is a tab for a Participants’ Worksheets. These will be your roadmap to navigating the Summit and will be made available on site at the Summit.

Introduction


Mapping The Future

p 24

These highlights were prepared from the full report by William Maga Consultants Ltd. (May 2008)

Highlights from Policy Influencers’ Perspectives on Breast Cancer Research

Introduction The Board of Directors of the Canadian Breast Cancer Research Alliance decided last June to take the recommendation of an external evaluation of the organization to explore the possibility of expanding the mandate of the CBCRA to go beyond funding of breast cancer research to facilitating the development of a national breast cancer research framework. This prospect will be explored at a summit in May 2008. In preparation for this summit, a series of background papers was produced which present various perspectives. This paper represents the views of those who set or influence policy related to breast cancer. This perspective was obtained through interviews with 15 individuals who either make or influence policy related to various aspects of breast cancer treatment and management at the federal, provincial, territorial and organizational levels. The individuals were identified by canvassing members of the breast cancer community and asking for recommendations of people who together would comprise an appropriate functional and geographical profile. Limitations to this data include the challenge of identifying the appropriate individuals in the different levels of government given that breast cancer is no single policy maker or influencer’s entire portfolio. Further, once the appropriate people were identified, getting sufficient time on the schedule of busy policy leaders was frequently challenging.

Current Priorities of Policy-makers

When asked about current priority activities in their jurisdiction, the participants mentioned a wide range of activities – from screening to palliation. Taken in total, there was a clear emphasis on screening and clinical trials as the current priorities. Participants’ knowledge of priorities within their own jurisdiction was usually restricted to one or two activities and they did not seem to have a full appreciation of what was happening in other jurisdictions, with those involved in screening among the few exceptions. Participants were then asked to make any observations related to breast cancer research in general that they might wish and to identify what they felt were important issues related to the areas of screening, treatment/cure and prevention/palliation. Under each category, research questions were identified.

As general observations, participants highlighted one overall priority and one concern. It seems that the search for priorities is an exercise that is being repeated at other levels across Canada, such as the one currently underway in British Columbia. The question arises of how to link the results of these exercises in a way which will maximize their utility to all levels of government and interested organizations. Secondly, there is a broad consensus regarding the need to address the future, if it is not already current, shortage of health human resources (HHR). Factors such as new technologies and expanded screening coverage are increasing demand for treatment and services while factors at work on the supply side such as retirement, burn-out and outdated sourcing processes are hampering attempts to meet those demands. Research Questions: 1. What fundamental changes can be made to the current approaches to the detection, treatment and management of breast cancer, and the funding thereof, in order to accelerate progress in its management and cure?

2. What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer? What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best be reduced? Early Detection

Regarding screening, it was felt that the current collaborative model involving different levels of government and organizations has pro-duced a number of benefits. The model has increased sharing of information and the development of standards for measures and targets. But despite the fact that early detection remains a major policy priority across Canada, it was also made clear that more needs to be done. The World Health Organization screening target of 70% has not been met consistently in any jurisdiction and the role of the family physi-cian in advocating early detection has to be strengthened. There is also the need for the programs to be more flexible and to overcome the “one size fits all” implementation approach. The “low hanging fruit” has been picked and the programs must be able to accommodate the cultural, ethnic and geographical variation of Canada and find new ways of convincing and enabling women to participate in early detection


programs. In addition, more context is needed from the broader women’s health and gender perspective. Finally, many interviewees noted the commonality of factors associated with chronic disease and raised the need to take integrated approaches where appropriate in order to maximize the benefit derived from the limited resources available. Research Questions:

1. What are the best communications strategies to educate family physicians about the realities of breast cancer and to encourage them to pass those lessons on to their patients? 2. What are the most influential factors in determining whether a woman is screened? How do these change in various populations and geographies (like the North)? 3. What are the different service models that would facilitate the delivery of screening services to women close to home? 4. How can we ensure that the most cost-effectiveness technologies, whether new or broadly established, are used? 5. What are the benefits and risk associated with genotyping? Treatment /Cure

With respect to treatment and cure, participants felt that the research and methodologies surrounding clinical trials and clinical practice guidelines are well established, especially given the exemplary work being done by the Clinical Trials Group of the National Cancer Institute of Canada. Concerns arose, however, about the length of time required to go from research to practice and questions raised about how the process could be expedited. This view was countered by the observation that, although analytical rigour is indeed time-consuming, it is essential and cannot be compromised. It was felt that the translation of research was also operating well through established processes, although the issue of maximizing the uptake of guidelines was raised. Wait times was also of key concern. Despite the increased profile provided by federal initiatives in the area and the resulting increase in attention given wait times by the research com-munities, there remain some basic questions about wait times. For example, at what point in time does waiting present a risk? What are the emotional impacts on patients and families of waiting? It was felt that more collaboration is needed among the provinces to maximize the exchange of information as was done in the case of screening. Research Questions: 1. How can clinical trials and other studies and their translation be expedited in order to get new treatments and approaches into practice as quickly as possible, while maintaining the rigour of the process? 2. How can the uptake of guidelines be maximized? 3. After what period of time and under what circumstances does waiting for treatment for various breast cancers become dangerous? 4. What are the physical and psychological impacts of waiting? 5. Are wait times a disease specific issue, requiring an appreciation of the characteristics of the disease or treatment; or is it a system-wide issue that can be resolved by organizational change or additional funding? 6. What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdic tions? What would be the best strategy for developing assessment and evaluation protocols? 7. How must the current system change in order to incorporate molecular science into medicine? 8. What role should non-medical interventions such as homeopathic treatments play not only in treatment but also in prevention and palliation?Prevention/Palliation


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There is an undeniable consensus that, when looking along the continuum, there is an imbalance between the level of research being undertaken in areas such as clinical trials and screening and areas like prevention, psycho-social programming and palliation. A number of reasons were cited for this – different methodologies, variation in time horizons of researchers and policy analysts, the much longer period of time required to investigate prevention issues as compared to other types of research. In addition, the need was highlighted to correct women’s misperceptions regarding environmental and lifestyle determinants of breast cancer as well as the basic facts related to early detection and screening. Finally, the need for expanded research in the areas of prevention, psycho-social programming and palliation was continually emphasized. Research Questions: 1. What are the factors which impede research into prevention, psycho-social and palliation issues? 2. What are the key causes of breast cancer generally across the population and within certain cultural groups? What are the best communications strategies for providing those populations with that information?

3. What population-based measures can be taken to reduce breast cancer incidence and increase screening? 4. Within an integrated population-based approach to reducing cancer or chronic disease, what niche activities related to breast cancer specifically are still required?

5. What are the models of an integrated approach that covers the full spectrum of care?

Policy Requirements for a Research Strategy

The majority of policy influencers agree that there is a clear need for a coordinating body, as part of a national research strategy, to target research to achieve better results. From a policy perspective, there is a need to ensure that researchers are more cognizant of policy requirements both in terms of types of evidence needed as well as the time horizons which exist outside the research community. Some interviewees felt that CBCRA and the Canadian Cancer Research Alliance have, to a certain extent, been able to fulfill that role - but more needs to be done. For instance, while CBCRA is considered by some participants to have done a good job in encouraging interaction between players, it was observed that “stovepipes” still remain and that researchers can be expected to “go by their heart and train-ing”. Often academic researchers are out of the picture until a discovery is made which propels a disease or possible cure to the fore. Suggestions were made regarding the need for “regularization and formalization” of interactions among policy influencers, researchers and stakeholders.

A national strategy must be inclusive of participants from the whole breast cancer community – researchers, policy influencers, survivors and patients. In fact, inclusion should go beyond the immediate breast cancer community to include non-single issue women’s groups because all women are potential patients. In terms of the essential players, it was felt that there is a need for national level coordination which possesses the “big picture perspective” - federal and provincial bodies like the Canadian Institutes of Health Research, the Public Health Agency of Canada and provincial ministries – although not without their demerits - were mentioned in this regard. It was noted that it is an advantage to have diversification and competition in the research funding field. It was also recognized that the Canadian Partnership Against Cancer (CPAC) and the Canadian Association of Provincial Cancer Agencies have significant roles to play. It was noted that a national strategy would best be lead by an organization which can achieve buy-in from all players; an organization which is essentially non-aligned, national and based on consensus building. A science advisory committee would also be necessary, composed of representatives from all segments of the community – screening, science, clinical, prevention, psycho-social and survivor. It was continually noted that a direct benefit of the development of a breast cancer research strategy would be a process which brings together all the actors – researchers, policy influencers, lawyers and ethicists. This process would promote a broad understanding of the goals and obstacles related to each group and in turn foster an integrated approach to disease management research - from prevention to screening to diagnosis to treatment to palliative care. Benefits would also arise indirectly from the establishment of a critical mass of funding and HHR that can be directed toward established priorities. The refinement of goals would help identify gaps in the evidence and duplication would be avoided.


Conclusions:

A coordinating body is needed which has the “big picture perspective” and is national, non-aligned and inclusive to target research into more cost-effective areas and to ensure that information is shared among jurisdictions. There is a need for a comprehensive assessment process for all cancer treatments, including those related to breast cancer. Research will continue to be a time-consuming process and the variation in time horizons among players will continue to cause frustration. Research is needed to identify ways of minimizing that delay and frustration. There is a significant gap in research related to prevention, psycho-social and palliation issues related to breast cancer as well as the provision of health services – particularly critical is the rural/urban and cultural variation issues. Much more effort must be put into breast cancer programs for First Nations and Inuit. There is also the need for strategies to increase the awareness of breast cancers facts and encourage access to screening; evaluations of existing strategies related to access and wait times; a translation component to provide a better understanding of the predictive factors for breast cancer and large scale studies related to prevention.

Appendix

List Of Policy Influencers Interviewed

Dr. Pierre Band Senior Medical Epidemiologist Healthy Environments and Consumer Safety Branch, Health CanadaMarcia Campbell Program Coordinator Government of the North West Territory Breast Cancer Screening, Yukon RegionSheree Davis Director, Health Systems Strategy Division Ontario Ministry of Health and Long-term CareSusan Fitzpatrick Executive Director Ontario Ministry of Health and Long-term Care Negotiations and Accountability Management Health Services Accountability and Performance Division Virginia Greene President, Business Council Former Chair, Canadian Breast Cancer Foundation Board of British ColumbiaJeanKammermayer A/Director,Women’sHealthand HealthCanada Gender Analysis DivisionKamiKandola MedicalHealthOfficer GovernmentoftheNorthwestTerritoriesDr.EshwarKumar Co-ChiefExecutiveOfficer NewBrunswickCancerNetworkDr. Antoine Loutfi Directeur Direction de la lutte contre le cancer Ministère de la Santé et des Services sociaux Jay Onysko A/Manager, Screening and Early Detection Public Health Agency of Canada Chronic Disease Management DivisionMelanie Rathgeber Program Director Health Quality Council, SaskatchewanSusan O’Reilly Vice President, Cancer Care British Columbia Cancer AgencyFaye Stark Nursing Consultant, Maternal and Government of the Northwest Territories Child Health, Department of Health and Social ServicesLianne Vardy Director, Chronic Disease Management Public Health Agency of Canada DivisionDawn Walker Special Advisor, Strategic Policy, Planning First Nations and Inuit Health Branch, Health Canada and Analysis Division The full report on Policy Influencers’ Perspectives on Breast Cancer Research is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).


Mapping The Future

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1. Biology

*Prevention *Diagnosis *Treatment



2. Etiology

*Prevention *Diagnosis

1.1 Normal Functioning

1.2 Cancer Initiation: Alterations in Chromosomes

1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes

1.4 Cancer progression and metastasis

1.5 Resources and Infrastructure


7.2 Applications of model systems

7.3 Resources and infrastructure related to scientific model systems

2.1 Exogenous Factors in the Origin and Cause of Cancer

2.2 Endogenous Factors in the Origin and Cause of Cancer

2.1/2.2 What are the key causes of breast cancer generally across the population and within certain cul-tural and sub-population groups (for example First Nations and Inuit)?

2.1/2.2 What are the key causes of breast cancer generally across the population and within certain cul-tural and sub-population groups (for

CSO Category¹ and corresponding Cancer Control Continuum categories²


CSO Code³

CSO Code³



CSO Category¹ and corresponding Cancer Control Continuum categories² CSO Code³


Policy Influencers’ Perspectives on Breast Cancer Research


2. Etiology (cont)

3. Prevention

*Prevention *Treatment


*Screening *Treatment *Diagnosis

2.3 Interactions of genes and/or genetic polymorphisms with exog-enous and/or endogenous factors

2.4 Resources and Infrastructure related to etiology

3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk

3.2 Nutritional science in cancer prevention

3.3 Chemoprevention

3.4 Vaccines

3.5 Complementary and Alternative Prevention Approaches

3.6 Resources and Infrastructure related to prevention

4.1 Technology development and/or marker discovery

4.2 Technology and/or marker evalu-ation with respect to fundamental parameters of method

3.1 What population-based interven-tions can be introduced to reduce breast cancer incidence? How could these be tailored to address the issues of sub-populations like the First Na-tions and Inuit?

3.5 What role should non-medical interventions such as homeopathic treatments play in prevention?




CSO Code³

CSO Code³





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5. Treatment

*Treatment

4.3 Technology and/or marker testing in a clinical setting

4.4 Resources and infrastructure related to detection, diagnosis or prognosis

5.1 Localized therapies: discovery and development

5.2 Localized therapies: clinical ap-plications

5.3 Systemic therapies: discovery and development

5.4 Systemic therapies: clinical ap-plications

5.5 Combinations of localized and systemic therapies

5.6 Complementary and alternative treatment approaches

5.7 Resources and infrastructure related to treatment

5.6 What role should non-medical interventions such as homeopathic treatments play in treatment?





4. Early detection, diagnosis and prognosis (cont)






6.1 Patient care and survivorship issues

6.2 Surveillance

6.3 Behavior

6.4 Cost analyses and health care delivery

6.1 What are the physical and phyco-logical impacts of waiting?

6.1 How should patient care and survivorship programs be tailored for sub-populations such as the First Nations and Inuit?

6.4 What are the benefits and risk as-sociated with genotyping?

6.4 How must the current system change in order to incorporate molecu-lar science into medicine?

6.4 What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer? What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best be reduced?

6.4 What are the models for an inte-grated approach that covers the full spectrum of care?

6.4 What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdictions? What would be the best strategy for developing as-sessment and evaluation protocols?

6.4 How can clinical trials and other studies and their translation be expe-dited in order to get new treatments and approaches into practice as quickly as possible, while maintaining the rigour of the process?

6.4 What is the ranking in terms of cost-effectiveness of new technologies relative to the most broadly used cur-rent technologies?

6.4 What is the appropriate approach to introducing oncology drugs across Canada to ensure equitable access?


Survivors’ Perspectives on Breast Cancer Research


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6. Cancer control, survivorship and outcomes (cont)



6.5 Education and communication

6.6 End-of-life care

6.7 Ethics and confidentiality in cancer research

6.8 Complementary and alternative approaches for supportive care of patients and survivors

6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research

6.4 Within an integrated population-based approach to reducing cancer or chronic disease, what niche activities related to breast cancer specifically are still required?

6.4 What are the most influential factors in determining whether a woman is screened? How do these change in vari-ous populations?

6.4 How can screening services be taken to women rather than having women travel to the services?

6.4 What population-based interventions can be introduced to increase percentage of women screened?

6.4 After what period of time and under what circumstances does waiting for treatment for various breast cancers become dangerous?

6.4 Are wait times a disease specific issue, requiring an appreciation of the characteristics of the disease or treat-ment; or is it a system-wide issue that can be resolved by organizational change or additional funding?

6.5 What are the best communications strategies to educate family physicians about the realities of breast cancer and to encourage them to pass those lessons on to their patients?

6.5 How can the uptake of guidelines be maximized?

6.5 What are the best communications strategies for providing subpopulations with relevant information?

6.7 What are the ethical issues associ-ated with genotyping?

6.8 What role should non-medical inter-ventions such as homeopathic treatments play in palliation?




¹ The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp).

² Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.

³ The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.


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Preface to Funders Summary and Table

The purpose of this preface is to provide a snapshot of current breast cancer research funding in Canada – its size and shape - to comple-ment the summary write-up which is focused on the views and opinions of these same funding organizations. There are five sections to this preface, ranging from a high level comparative snapshot, trends in cancer research funding, a breakdown of the funding provided to breast cancer research by CSO category and by type of grant, an identification of the sources of funding not covered by CCRA, and finally a brief synopsis as to the costs of different types of research funding.

1. Snapshot of Breast Cancer Research Funding

Data has been provided by the Canadian Cancer Research Alliance (CCRA). More in-depth analysis is available for the funding year 2005 with more high level comparators only being available for 2006. While there was a significant increase in the number of funding organiza-tions contributing data to the 2006 survey, data from some key organizations is missing (see comments at end of document).

Based on this data, breast cancer remains the most highly funded of all cancer sites, but represents a smaller percentage of the total pot (12% as opposed to 15%).

Table 1: Comparison of Breast Cancer Research Funding 2005 and 2006

Year 2005 (1) 2006 (2)Number of CCRA members 19 20 Overall funding to breast cancer research $38.5 M ( 15% of $253.6 M) $49.5 M (12% of $412.8 M)Direct funding to research grants $30.3 M $38.7 M (18% of $214.2 M)Funding of Canada Research Chair program N/A $1.9 M (11% of 17 M)Funding of trainees $2.02 M $3 M (15% of $20 M)Funding of CFI grants Not applicable $3.2 M (4% of $80.4 M)Funding of Equipment/Infrastructure $2.1 M Not availableSalary support $1.2 M Not available

(1) In 2005, data for the survey were contributed by CCRA members and affiliated organizations only.

(2) In 2006, 14 additional organizations (including Canada Research Chairs, Canada Foundation for Innovation, Stem Cells Network and Networks of Centres of Excellence) contributed data to the survey, in addition to the CCRA members and affiliated organizations. Genome Canada is now a CCRA member.

2. Cancer Research Funding: A Trending Comparison of Different Cancer sites

In terms of trends over the last four years, Figure 1 suggests that breast cancer research funding has increased at a faster rate compared to other sites. Also showing growth is research funding for brain and prostate cancer – but particularly with prostate, the data may be misleading given the inclusion of additional data sources in 2006.


$ -

$ 5 , 0 0 0 , 0 0 0

$ 1 0 , 0 0 0 , 0 0 0

$ 1 5 , 0 0 0 , 0 0 0

$ 2 0 , 0 0 0 , 0 0 0

$ 2 5 , 0 0 0 , 0 0 0

$ 3 0 , 0 0 0 , 0 0 0

$ 3 5 , 0 0 0 , 0 0 0

$ 4 0 , 0 0 0 , 0 0 0

$ 4 5 , 0 0 0 , 0 0 0

$ 5 0 , 0 0 0 , 0 0 0

2 0 0 3 2 0 0 4 2 0 0 5 2 0 0 6

B r a in B r e a s t C o lo r e c t a l L e u k e m ia L u n g P r o s t a t e O t h e r

Figure 1: Trend in Site Specific Research Funding – 2003-2006

* This chart was obtained from Kim Badovinac, Manager, Canadian Cancer Research Survey, Canadian Partnership Against Cancer.


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Table 2: Breakdown by CSO Category – 2005 Data

Early detection, Cancer control, diagnosis and survivorship Scientific Biology Etiology Prevention prognosis Treatment and outcomes model systemsACB AHFMRBCCACCMBFCSQFRSQMSFHROICRSCACBCFCBCRACCS-NCICCIHRCTCRINRCNCIC-TFFCRS

Table 3 categorizes the investment by type of grant. The preponderance of operating grants becomes obvious when analyzed in this way.

* All research grants funded by CBCRA are classified as operating grants in the CCRA database, including CBCRA’s Strategic Initiatives grants.

For more information, please consult the list of definitions and acronyms in the final section of your binder.

Table 3: Breakdown by Grants Types - 2005 Data

Research related Salary Trainee Equipment/Infrastructure Operating Grants support support research ACB AHFMRBCCACCMBFCSQFRSQMSFHROICRSCACBCFCBCRA*CCS-NCICCIHRCTCRINCIC-TFFCRS

3. The Nature of the Research Investment

Table 2 categorizes the research investment by CCRA members and affiliated organizations in each of the CSO categories. Only CBCRA (Total: $8,824,242) and the Alberta Cancer Board (Total: $275,874) fund across the full spectrum of breast cancer research.


4. Funds not Included in the CCRA Database

The largest groups of funding organizations remaining outside of the CCRA database are the provincial cancer foundations and hospital foundations1. While specifics are not available, there are some broad data points to inform the discussion:

•Revenuewithinhospitalfoundationshasbeengrowingatasignificantpace,especiallyinAlbertaandNovaScotia.Overall revenue had increased 86% in 2006 from numbers recorded in 2001 •Ontariorepresents68%ofallgivingtohospitalfoundations,with40%ofallfundsbeingraisedinTorontowiththelargest foundations being Princess Margaret Hospital Foundation and the Hospital for Sick Children Foundation •HospitalFoundationsareexperiencingsignificantincreasesintheircostoffundraisinggiventhecompetitivemarketplacefor professional fundraisers the overall expansion of fundraising programs; the greater investment in marketing and communications, and new spending on donor relations in an effort to retain donors and promote a philanthropic culture •Thereislittleinformationavailableastohowthesefundsarespent •TheWeekendtoEndBreastCancerappearstobegrowingitsrevenueinCanada.However,Winnipeghasdecidednottohold an event in 2008. Data presented in Table 4 reflects gross amounts. No disclosure is made as to net versus gross receipts, or what the split is between funding of breast cancer care initiatives and breast cancer research.

Table 4: Funds raised in 2007 by Provincial Cancer Foundations and Hospital Foundations through Weekend to End Breast Cancer Walks

City Beneficiary AmountVancouver BC Cancer Foundation $5.1 MCalgary + Edmonton Alberta Cancer Foundation $12 MWinnipeg Cancer Care Manitoba Foundation $2.3 MOttawa Ottawa Regional Cancer Foundation $2.6 MToronto Princess Margaret Foundation $17.3 MMontreal Jewish General Hospital Foundation $7.9 MTotal: 2007 $47.2 M

Source: Google – Weekend to End Breast Cancer provincial sites

5. Size of Research Grants

Some preliminary figures are presented below to provide guidance to Summit participants as to the cost associated with different funding vehicles. Input from leaders of research funding organizations suggests the following ballpark figures:

Operatinggrants(e.g.,CBCRA,NCIC,CIHR,CBCF) Generallybetween$300Kand$1.5Mdependingonthelength(2-5years) of the grants and the area of research (epidemiology grants have higher ceilings, fundamental science grants have lower ceilings).

Team grants Generally between $1 M and $ 1.5 M per year for up to 5 years.

Clinicaltrials Amountvarieswidely.Generallyclinicaltrialscostbetween$3Kand $4Kperpatient.However,withnewexpensivedrugs,thecostcanbeup to$20K-$30Kperpatient.

Cohort studies The Ontario Institute for Cancer Research has budgeted $20 M over 5 years for their cohort study.

1Data from report: Trends in Hospital Fundraising and Expenditures (2001-2006) the Offord Group, Inc and Innovative Research Group, Inc. April 2008


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Breast Cancer Research Priorities:A Summary of a Survey of Organizations Funding Breast Cancer Research in Canada and Related Key Informant Interviews

Brian Rush & Nancy DuboisVirgo Planning and Evaluation ConsultantsMay 2008

IntroductionIn preparation for a National Summit on Breast Cancer Research, in Toronto on May 26 and 27, 2008, the Canadian Breast Cancer Research Alliance undertook a multi-pronged process to conduct research, and gather perspectives and opinions concerning key issues in breast cancer research today.

This report presents the findings from a survey of organizations that fund breast cancer research in Canada as well as more in-depth interviews with representatives of a small number of these same organizations. The results represent the collective views of 13 targeted key informant interviews and twenty (approximately 35%) of a potential 58 breast cancer research funding organizations that completed an on-line survey.

By design, the online survey and in-depth interviews were complementary to each other, thereby allowing for more meaningful input and to elicit a deeper understanding of issues and perspectives from agencies that fund breast cancer research. The broader themes consistent across the two data sources, and the subject of an integrated analysis were: (a) Research Priorities and Perspectives; (b) Funder Collabora-tion; (c) System Gaps and (d) a National Breast Cancer Research Strategy.

Research Priorities and PerspectivesCurrent Organizational Priorities: Based on the self-identified current top, second and third priorities of the funding organizations, no one broad category of research consistently emerged at the top of the list. Overall the highest priorities identified were risk factors and preven-tion, treatment, research capacity development and lab/basic research with health services/systems research receiving the lowest rating among the eight priorities identified.

The fact that most of the broad research areas were identified as current priorities suggests that the identification of one overall research priority could be challenging within a national research framework. Perhaps more exploration within the sub themes of a category is war-ranted in further defining research priorities within a national research framework.

Prioritizing Previously Identified Priorities: Survey participants were also asked to rate the relative importance of nineteen breast cancer research priorities that had been previously identified by CBCRA through a broad consultation with the research community in 20061. They were also asked to identify the areas they considered to be most important from this list. The topic areas that emerged were: biomark-ers, the early detection of metastatic disease and knowledge translation processes. Lifestyle influences on breast cancer, breast cancer subtypes and screening tools for high risk women were all equally rated as the next areas of importance. Overall, biomarkers received the highest number of selections as the ‘most important’. Emerging Priorities: Options regarding “emerging” topic areas for breast cancer research also provide insight into potential priority areas for consideration in national planning activities. Although opinions were quite varied, the following areas yielded some common ground across participants: cancer genetics; environmental risk factors; metastasis-related research, translational research, and a more holistic, life course perspective as an organizing research framework. Some of these opinions on emerging research converge with the ratings of relative importance of various topics (e.g. metastasis and translational research). Going forward, it will be important to triangulate these findings, and other opinions summarized in this report from individual respondents, with other sources of information being brought to bear at the Summit.

1 See report in Summary of Canadian Breast Cancer Researcher Priorities


International Competitiveness: Opinions varied considerably on the areas in which Canada is currently international competitive (e.g., cancer genetics, cancer biology) and where Canada had the potential to be a world leader (e.g., quality of life and survivorship; large scale clinical trials). Importantly, several participants called for any work on a national breast cancer research framework to be positioned in a global context, and to consider priorities and funding processes in relation to cancer research generally. Several strengths unique to the Canadian context were identified, for example, the geographic and multicultural diversity, and the universal health care system. When asked directly what would it take to realize the potential for renowned breast cancer research in Canada, the main themes were that of partnerships (both within and globally), time and money.

Funder CollaborationMost respondents to the survey (80%), and approximately half of those interviewed, reported some history of collaborative work with other funders. There is, therefore, an established base of experience among funding organization who may wish to explore the potential for in-creased collaboration. Lessons learned from previous collaborative work would include the need to work from a clearly stated and common goal; engage a limited number of partners and those with similar operating values; and be very clear with respect to level of commitment, roles and responsibilities. There were also strong opinions expressed about the importance of a “shared sense of purpose”, similar operat-ing values as well as the need to be define the “value-add” in working more strategically together.

Although the enthusiasm for collaboration was reasonably high (caveats and cautions aside), the current level of collaboration on the top organizational priorities was markedly low. The most frequently cited areas for collaboration included translational research and preven-tion. The data gathered suggests underlying factors such as the ability to find the right partner with similar priorities or that collaboration was not a preferred way of doing business may explain the relatively low level of current collaboration on those topics of highest priority in each organization. A more formalized national network may assist in linking organizations together with a mutual interest in addressing an identified research priority area.

A National Breast Cancer Research Strategy There was strong support for the development of a national breast cancer research framework, although there were several caveats and recommendations provided for further consideration. This clearly suggests there is a readiness for the discussions that the National Summit will stimulate. It will be important, however, to recognize that the support for a national strategy was not universal among key informants. One person, for example, added the cautionary note that the need for better coordination does not automatically translate into the need for a national strategy.

System GapsThe major gaps identified in the current breast cancer research system in Canada included: the need for funding to new multidisciplinary teams (clinicians/basic researchers), more team grants for long term sustainable programs and renewable grants to enable support of long term studies. Other gaps and needs that came to the fore were the critical shortage of physician/clinician scientists, the need for more strategic and integrated partnerships, and the need for leadership generally in order to fully realize Canadian potential.

Conclusion This project has successfully garnered feedback on breast cancer research priorities, research collaboration, system gaps and other issues of relevance for a potential national research framework, from the perspective of research funding organizations in Canada. It is instructive to conclude with some observations from this project that may help identify areas of strengths going forward, and possible challenges to be addressed in the development of a national breast cancer research framework.

Strengths: •ThereisstrongsupportfordevelopinganationalbreastcancerresearchstrategyinCanada,withcarefulconsiderationtobe given to its essential purpose, value-add and many other operational issues that would need to be worked out. •Thereisprevioushistoryofcollaborationbymanykeyplayersandopenacknowledgementoflessonslearnedoncritical success factors and key processes. •Althoughmoreresourcescanbeputtogooduseforbreastcancerresearch,Canadadoeshaveasolidfundingbaseupon which to build a more strategically development research agenda. •Canadaalsoclearlyhasacadreofexcellentandinternationallyrenownedresearchersworkingintheareaofbreastcancer. Existing national and international relationships will be key to fitting an emergent Canadian research agenda into an international context.


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•ThereissomeagreementthatCanadaisparticularlystronginthebiomedicalarea,forexample,cancergenetics,suchasthe Human Genome project, and cancer biology. •Canadaalsooffersseveralotheruniquestrengthsforinternationalleadership,forexample,advantagesderivedfromour universal health care system and its geographic and multicultural diversity •ThevariousdatagatheringactivitiesimplementedinthesupportoftheSummit,includingthemanydetailedfindingsinthis report from the funder perspective, represent groundwork already completed and clearly provide an important foundation for future strategic planning.

Potential Challenges: •Thereisaneedforadditionalphysician/clinicianscientistsinCanadathataredoingbreastcancerresearch.Thiswould,for example, increase the quantity of translational research, moving the research findings to the patient level. •Othersystemgapsthathavebeenidentified,suchastheneedforlargerteamgrantswithintegratedteamsandlonger-term funding, would require not only a significant amount of collaboration but also a significant funding investment. •Itispossiblethattoomuchcontinuedfocusonbreastcancer,outsideofthebroaderfieldofcancerresearch,willhavesome negative consequences for scientific advancements that are important for breast cancer (knowledge and methods). •Thevariationinscopeandprioritieswithinthenationalversusprovincial/territorialfundingcontextsmaypresentchallenges. A small number of key informants mentioned issues related to provincial differences (e.g., smaller provinces challenged to fit their priorities and their funding dollars into larger-scale initiatives). •Thediversityamongthefundingbodiesmaypresentachallenge.Forexample,somedistributefundsandtheirrecipients decide what research to support, compared to other organizations that more directly support individual topics and studies. •Roleclarityisanidentifiedpre-requisiteforsuccessfulcollaboration.Examplesofsuchissuesforclarityinclude:who participates, what is the process for inclusion, which organization/s leads, in the development of a national research frame work; do participants speak as individuals or as organizational representatives with decision-making authority; and the role of the CBCRA as a possible coordinator versus a ‘voting member”. •Theremaybe“turf”issuesingeneralthatwillrequireobjectiveleadershipandcleartermsofreference. •Limitedattentionwasgiventoensuringanevaluationsystemisinplaceforassessingtheeffectivenessofapotentialnational framework. This stands in contrast to the salience attached to clear goals, accountability and a value-add perspective on more collaborative work.

The full report on Breast Cancer Research Priorities: A survey of organizations funding breast cancer research in Canada and related key informant interviews is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).

Appendix

Organizations Self-Identifying in the Web-based Survey

Those responding to the survey were given the opportunity to identify themselves. Fifteen of the 18 did so, as follows:

National Organizations •CanadianInstitutesofHealthResearch(CIHR) •NCICProvincial Organizations •NovaScotiaHealthResearchFoundation •OntarioMinistryofResearchandInnovation •SaskatchewanHealthResearchFoundation •FondsdelaRechercheenSantéduQuébecCancer Care Agencies •CancerCareProgram,EasternHealth •SaskatchewanCancerAgencyResearch Institutes •SegalCancerCentre-JewishGeneralHospital •OntarioInstituteforCancerResearch


NGO’s / Charitable Foundations •CUREFoundation •BreastCancerSocietyofCanada •TheCancerResearchSociety •RethinkBreastCancer •CanadianCancerSocietyNewfoundlandandLabradorDivision

(b) Key Informants

National Organizations Dr. Joy Johnson Scientific Director Canadian Institutes of Health Research – Institute of Gender and HealthDr. Heather Bryant Vice–President, Cancer Control Canadian Partnership Against CancerMs. Jessica Hill CEO Canadian Partnership Against Cancer

Research InstitutesDr. Tak Mak Director Campbell Family Institute for Breast Cancer ResearchDr. Anne Marie Mes-Masson Centre de recherche CHUM Institut du cancer de Montréal, Hôpital Notre-DameDr. Elizabeth Eisenhauser Director, Investigational New Queens University Drug Program, NCIC Clinical Trials GroupDr. Victor Ling Scientific Director Terry Fox Research Institute

NGOs / Charitable Organizations Ms. Christine Lackey Vice President, Strategic Initiatives The Princess Margaret Hospital FoundationMs. Jan Engemoen CEO Canadian Breast Cancer Foundation BC/Yukon RegionMr. Peter Goodhand CEO Canadian Cancer Society - Ontario DivisionDr. Michael Wosnick Executive Director National Cancer Institute of CanadaMs. Mary-Jo DeCoteau Executive Director ReThink Breast CancerDr. Mario Chevrette President The Cancer Research Society

National Breast Cancer Research Summit | Results

Mapping The Future

CSO Category (1) and corresponding Cancer Care Continuum categories (2) CSO Code (3)

Funding organizations’ perspectives on breast cancer research priorities % rating priority as very important; [x] overall rating in importance; self-identified current and emerging priorities

Research Priorities identified by Funding Organizations


CSO Code³

1. Biology


7. Scientific model systems*Prevention*Diagnosis*Treatment

2. Etiology


1.1 Normal Functioning1.2 Cancer Initiation: Alterations in Chromosomes1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes



Emerging Priority


7.2 Applications of model systems7.3 Resources and infrastructure related to scientific model systems

2.1 Exogenous Factors in the Origin and Cause of Cancer2.2 Endogenous Factors in the Origin and Cause of Cancer

2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors2.4 Resources and Infrastructure related to etiology

Emerging Priority

1.4 Early Detection of Metastasis Disease (#5) – 50% [3] 1.4 Ability to metastasize (#19) – 33.3%

Genomics

7.1 Animal models of breast cancer progression (#6) – 22.2%

2.1/2.3 Exposure to risk factors (#18) – 27.8%

2.1/2.3 Exposure to risk factors (#18) – 27.8%

Genomics


Mapping The Future





CSO Code³

3. Prevention



*Screening*Treatment*Diagnosis



3.3 Chemoprevention

3.4 Vaccines3.5 Complementary and Alternative Prevention Approaches3.6 Resources and Infrastructure related to prevention

Current Priority

Emerging Priority


4.2 Technology and/or marker evaluation with respect to fundamental parameters of method4.3 Technology and/or marker testing in a clinical setting4.4 Resources and infrastructure related to detection, diagnosis or prognosis

Current Priority

Emerging Priority

3.1/3.2 Lifestyle changes in subpopulations (#3) – 22.2%3.1 Lifestyle influence on breast cancer (#15) – 27.8%3.1 Exposure to risk factors (#18) – 27.8%

3.1/3.2 Lifestyle changes in subpopulations (#3) – 22.2%

3.3 Clinical prevention trials in high risk women (#17) – 27.8%

Prevention

Environmental exposure

4.1/4.2 Biomarkers (#1) 55.6% [1]4.1 Breast cancer subtypes (#2) – 33.3%4.1 Breast cancer heterogeneity (#8) – 16.7%

4.1/4.2 Biomarkers (#1) 55.6% [1]4.2 Lifestyle influence on breast cancer (#15) – 27.8%4.3 Screening tools for high risk women (#4) – 33.3%4.4 Molecular pathology platforms (#16) – 38.9%

Early Detection

Genomics


Mapping The Future





CSO Code³

5. Treatment

*Treatment





5.2 Localized therapies: clinical applications


5.4 Systemic therapies: clinical applications




Emerging Priority


6.2 Surveillance

6.3 Behavior


5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%



5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]5.4/5.7 Phase I and II intervention trials (#14) – 38.9%5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%

5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]

5.4/5.7 Phase I and II intervention trials (#14) – 38.9%

Targeted therapies Genomics

6 (all) KT of intervention (#7) – 38.9% [2]6.1 Health care delivery (#10) 33.3% [3]6.1 Survivorship interventions (#12) – 16.7%

6 (all) KT of intervention (#7) – 38.9% [2]

6 (all) KT of intervention (#7) – 38.9% [2]6 (all) KT of intervention (#7) – 38.9% [2]6.4 KT processes (#13) -33.3%

6.4/6.5/6.7 Inequities (#11) – 11.1%6 (all) KT of intervention (#7) – 38.9% [2]


Mapping The Future





CSO Code³




6.8 Complementary and alternative approaches for support-ive care of patients and survivors


Current Priority

Emerging Priority

6 (all) KT of intervention (#7) – 38.9% [2]6.4/6.5/6.7 Inequities (#11) – 11.1%


6 (all) KT of intervention (#7) – 38.9% [2]6.4/6.5/6.7 Inequities (#11) – 11.1%



Translational Research Evaluation of Supportive Care

Health services/new models

1 The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp).

2 The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.

3 Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.

4 The following 19 Strategic Research Priorities were identified at CBCRA December 1-2, 2006 Strategic Research Agenda Workshop (SRAW). In the table above, the number in parenthesis indicated the ranking of the priority.

1- “BIOMARKERS”: Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression

2- “BC SUBTYPES”: Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations

3- “LIFESTYLE CHANGES IN SUBPOPULATIONS”: Look at particular subpopulations and how the lifestyle changes that they undergo influence their breast cancer risk

4- “SCREENING TOOLS FOR HIGH RISK WOMEN”: Development of sensitive, specific, accessible, cost effective screening tools to identify women with high risk

5- “EARLY DETECTION OF METASTATIS DISEASE”: Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent

6- “ANIMAL MODELS OF BC PROGRESSION”: Develop better animal models for breast cancer progression

7- “KT INTERVENTIONS”: Knowledge transfer: Increase knowledge about interventions, what works, what doesn’t, studies of uptake and effectiveness on the interventions where evidence exists

8- “BC HETEROGENEITY”: Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale

9- “MICROENVIRONMENT OF METASTATIC BC”: Therapy for metastatic breast cancer targeted at interaction between tumor and its microenvironment

10- “HEALTH CARE DELIVERY”: How is care currently being delivered? Are we doing the things we ought to do?

11- “INEQUITIES”: Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators

12- “SURVIVORSHIP INTERVENTIONS”: Survivorship: better understanding of issues and design of interventions

13- “KT PROCESSES”: What are the best Knowledge Translation processes in different settings, in order to influence practices, policies?

14- “PHASE I AND II INTERVENION TRIALS”: Focus on multi-centre Phase I and II trials to test novel paradigms for intervention

15- “LIFESTYLE INFLUENCE ON BC”: How do nutrition/ lifestyle/ natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level?

16- “MOLECULAR PATHOLOGY PLATFORMS”: Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform

17- “CLINICAL PREVENTION TRIALS IN HIGH RISK WOMEN”: Clinical prevention trials in genetically high risk women

18- “EXPOSURE TO RISK FACTORS”: Biomarkers of exposure to risk factors (environment) through long term cohort studies

19- “ABILITY TO METASTASIZE”: Does the ability to metastasize develop during growth at the primary site?

National Breast Cancer Research Summit |

Mapping The Future



Mapping The Future

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Brian Rush & Nancy Dubois, VIRGO Planning and Evaluation Consultants (May 2008)

Highlights from Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer

Introduction

The Canadian Breast Cancer Research Alliance (CBCRA) is convening a National Summit in Toronto on May 26 and 27, 2008. In preparation, the CBCRA undertook a multi-pronged process to conduct research and gather perspectives and opinions concerning key issues in breast cancer today, including a survey aimed getting the opinions of breast cancer survivors, family members/loved ones and others involved in breast cancer area (e.g., caregivers, health professionals, volunteers). This report presents the findings from this survey.

Methods

A web-based survey questionnaire was designed based on the identified needs for information (e.g., coverage of topics; level of detail required), and relevant literature/reports on breast cancer research and needs of survivors and family members. Input was provided into the questionnaire from multiple perspectives including researchers, breast cancer survivors, family members, and executives of breast cancer stakeholder organizations. Following a pilot test and a professional “plain language” review the questionnaire was posted for Internet access. The survey was available in both English and French. The web links to the survey advertised/promoted by eleven breast cancer or-ganizations across Canada. The survey site was open for a total of 20 days and 808 individuals entered the site and completed the survey in its entirety.

The survey was successful in capturing a diverse group of people in terms of age, geographic representation across Canada, and experi-ences related to breast cancer. It is important to note, however, that the survey was not designed to randomly sample breast cancer survivors and others affected by breast cancer. Importantly, the final sample is comprised of a group of breast cancer survivors of younger age than is the norm in the population – as reflected in both the large percentage who are pre-menopausal and the relatively short duration since initial diagnosis. Caution must therefore be exercised in generalizing the findings to all breast cancer survivors and others affected by breast cancer living in the community in Canada.

Results

(i) What is the perceived importance of the main topic areas for breast cancer research?The three categories of “treatment”, “screening” and “risk/factors/prevention” were rated highest by respondents, followed by lab research. The two categories of “supportive care and quality of life” and “health systems and health services”, received lower points, on average. These are relative ratings of perceived importance and not an indicator of absolute importance to participants.

(ii) Are the demographic characteristics of the respondent associated with the perceived importance of major categories of breast cancer research? •Therewerenodifferenceaccordingtotheagecategoryoftherespondent; •Englishlanguagerespondentsgavehigherratingsto“riskfactorsandhowtopreventbreastcancer”comparedtotheirFrench language counterparts who gave higher ratings to “breast cancer treatment”; •TherewasalsoastatisticallysignificantregionaldifferencethatreflectedlowerratingsonaverageforQuebecfor“riskfactors and how to prevent breast cancer” and correspondingly higher ratings for “breast cancer treatment”.

(iii) Is the respondent’s experience with breast cancer associated with the perceived importance of major categories of breast cancer research? • SurvivorsandFamilyMembersgavehigheraverageratingsto“breastcancertreatment”; • TheSurvivorgroupgaveslightlylowerratingsto“healthsystems/services”; • Participantswhohadexperiencedtheirinitialdiagnosisofbreastcancerlessthantwoyearsagogavehigherratingto“breast cancer treatment” compared to women with longer histories; •Womenwhohadbeendiagnosedbeforemenopausegavelowerratingsonaverageto“screeningforbreastcancer”and higher rating for “breast cancer treatment” compared to women diagnosed after menopause; •Therewerenodifferencesintheaverageratingsgiventoeachtypeofresearchforwomenwhohadbeendiagnosedasecond time; the length of time since second diagnosis, or whether the woman had experienced metastatic breast cancer.


(iv) What is the level of support given to specific sub-topics within the major categories of breast cancer research? Respondents assigned different levels of support to each of several sub-topics within the major categories. Areas receiving high support ineach of the categories include:

Risk factors and how to prevent breast cancer: • Howfamilyhistoryrelatestotheriskofbreastcancer(geneticresearch) • Howenvironmentalapproachescanreducetheriskofbreastcancer • Howthefoodweeatandbodyweightrelatetotheriskofbreastcancer

Early detection: • Findingnewwaystoensurethatcancerthatspreadstootherpartsofthebody(metastaticbreastcancer)isfoundearly • Findingbetterwaystoscreenforbreastcancerthatwouldimproveonmammography • Findingwaystodetectbreastcancerthatcauselessdiscomfortforwomenandgiveclearerresults

Breast cancer treatment: • Researchonthetreatmentsforcancerthatspreadstootherpartsofthebody(metastaticbreastcancer) • Researchonnewtherapies(suchasvaccinesandgenetherapies) • Researchonnewwaystodosurgeryandradiationtreatments

Supportive care and quality of life: • Researchonwaystomanagepain • Researchonwaystoreducepainandswellinginthetreatedarea(aftercancertreatmentsorsurgery) • Researchonthesupportthatwomenneedduringthecourseoftheirdisease

Health systems and health services: • Researchonwaystokeephealthcareprovidersup-to-dateonthebesttreatmentandsupportmethods • Researchintoplansandpoliciesthatwillensurethereareenoughtrainedhealthcareprofessionalsfortreatmentandsupport • Researchthathelpstodefinethebestbalanceofprevention,treatment,support,andend-of-lifecareineachcommunity

Lab research (also called basic research): • Researchintohowbreastcancerspreadstootherpartsofthebody(metastasisandinvasion) • Researchintocancerstemcells • Researchintohowbreastcancerdevelops(thebiologyofbreastcancer)

(v) What topic areas for breast cancer research did respondents identify as being important? Survey participants were offered the opportunity to identify additional topics they felt were not adequately covered in the survey ques-tions. They also responded to an open-ended question at the conclusion of the survey asking for any additional input they would like to provide to improve breast cancer research in Canada. These qualitative data were coded into the broad categories of breast cancer research with the responses falling into the two broad categories of “health services/health systems” and “supportive care/quality of life” being mentioned the most frequently. More detailed coding yielded the following highlights in terms of specific topic areas of high importance for participants.

• environmentalexposureincludinggeographicvariationandfoodsupply • screening/gettingadiagnosisforyoungwomen • investigatingwhyamammogramcausessomuchpain/discomfortortojustimproveonmammogram • complementary/alternativetherapies(e.g.,acupuncture,massage,naturopathic,herbal,meditation,blendingEasternand Western medicine) • causesandtreatmentoflymphadema • bettertargeteddrugsandtreatment/lesssideeffects/lesstoxic-harsh • psychosocialandsupportingeneral;stressmanagement,mentalhealthissues • familyandcaregiversupportandsupportformeningeneral • betterandmoresensitivecommunicationtopatients • reducingtheamountoftimebetweeninitialdiagnosisandtreatment • triplenegativebreastcancer


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• breastcanceramongyoung/pre-menopausalwomen • educationtothepublic(i.e.,beyondscreeningperse)

Highlights of the feedback concerning breast cancer research and research funding included: • theneedformorefundingormoreresearchingeneral • investingmoredirectlyinresearchandtreatmentandminimizingadministration/overhead/bigsalaries • morecoordinationofresearch(e.g.,sharinginfoacrossteams;morecentresofexcellenceandlesssmall/territorialresearch and pools of money; building upon and not duplicating international work).

Conclusions:

Several study limitations must be considered in interpreting the findings from this survey. These include:

• Theyoungerageandlargerproportionofwomenwithpre-menopausalbreastcancerthanwouldhavebeenexpected.How ever, there were no age difference in quantitative results obtained and few differences based on number of years since initial diagnosis or pre- versus post-menopausal histories. Thus, it is not clear whether the results of the survey would have been substantively different with a more representative sample. • Sub-topicsratedbyrespondentswithineachofthebroadcategoriesofbreastcancerresearchdidnotcapturetherichand varied spectrum of research within these areas. This is important to keep in mind when comparing these findings with priorities identified by other data collection strategies and perspectives (e.g., funders). • Theinter-relationshipacrossthemanycodedcategoriesisnotevidentinthewaythedataarecodedanddisplayed.Examples of this inter-connectivity are concerns about the availability of MRI and related issues about the limitations of mammograms; and financial barriers in the health system and mental and emotional stress about financial consequences of a breast cancer diagnosis supports needed in that area. • Thechallengeintheinterpretationofthefindingswithrespecttolab/basicresearchisalsoacknowledged.Whenaskedto rate topics in relative terms it is likely that the respondents gave higher ratings to things they felt were closer to their own experience, thereby scoring the domains of prevention, screening and treatment higher. Respondents may have been challenged to make the connection between lab/basic research and the more familiar domains of prevention, screening and/or treatment. Certainly the results do not diminish the importance of this work in the breast cancer area.

Within these constraints the following points are highlighted:

Balanced approach: It is interesting that the three categories of research that were given the most points on average in terms of impor-tance covered the spectrum of treatment, screening and prevention. This would support a balanced funding portfolio across this spectrum.

Priorities across the broad areas of research: Although research studies on breast cancer report many important issues related to health services for breast cancer (e.g., lack of coordination/communication across providers) as well as supportive care and quality of life (e.g., need for psychosocial supports), on the whole, these two categories scored lower than the others. For the majority of respondents, prevention, screening and treatment might be viewed as the “need to know”, whereas health systems and supportive care might be seen as less critical in terms of overall impact.

The above notwithstanding, the issues of supportive care/quality of life and health services/systems clearly came to the fore in the qualita-tive data. This reinforces their importance and salience for the respondents even though in relative terms the other areas may be more important. For reasons identified above, the results do not speak clearly to the relative importance of lab/basic research which is consid-ered foundational to much of the work in the breast cancer area.

Health systems/services: There were many salient issues brought forward with respect to the health care system, including issues of waiting time; coordination/integration; financial barriers; supply of qualified people; wide variation in protocols and quality of services; sig-nificant challenges in rural/remote areas many issues focused on the knowledge; and communication skills of physicians and other profes-sionals working with women going through the trauma of the diagnostic and treatment experience. It is anticipated that the results of this survey and other information collected for the National Summit will be cross-referenced to the categories of research used in the Common Scientific Outline (CSO). Since health systems/services research topics are subsumed under other broad categories (mostly “cancer control, survivorship and outcomes”) it will be important to ensure that the many issues related relevant for a health systems research agenda do not get lost in the translation process.


Some specific areas of special concern:

• Thebroadtopicofbreastcancerandyoungerwomenwasveryimportanttoahighpercentageofrespondentsandseveral sub-issues were identified within the categories of prevention, screening, treatment, supportive care, and health services/systems. • Theimportanceofresearchonmetastaticcanceralsocutacrossseveralareas. • Theissueofpsychosocialandothersupportsneededbefore,duringandaftertreatmentisseenascriticallyimportant. • Moreresearchintoenvironmentalcausesandriskfactorswasseenasextremelyimportant. • Moreresearchseenasneededconcerningawiderangeofalternativeandcomplementarytreatmentapproaches.

With respect to breast cancer research and research funding, participants voiced their appreciation for work done to date but many also expressed the need for more collaboration and sharing of information among researchers. A small but notable minority also voiced concern about the slow progress on many important issues and the need to focus research efforts.

The full report on Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).


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1. Biology




2. Etiology











1.3 Research into cancer stem cells

1.4 Finding new ways to ensure that cancer that spreads to other parts of the body (metastatic breast cancer) is found early

1.4 Risk/prevention of recurrence; why recurrence after 5 years?

2.1 How the food we eat and body weight relate to the risk of breast cancer?2.1 Research into the effects of food and exercise on how breast cancer develops2.1/2.2/2.3 Why is breast cancer among young women/pre-menopausal increasing?



CSO Code³

CSO Code³





Research Priorities Indentified by Survivors


2. Etiology (cont)


3. Prevention

*Diagnosis *Treatment


2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors




3.3 Chemoprevention

3.4 Vaccines



2.1/2.2/2.3 Why is breast cancer among young women/pre-menopausal increasing?

2.3 Genetic risk factors; study people with no family history

2.1/2.2/2.3 Why is breast cancer among young women/pre-menopausal increasing?

3.1/3.2 How environmental approaches (including geographic variation) can reduce the risk of breast cancer

3.1/3.2 How environmental approaches (including geographic variation) can reduce the risk of breast cancer






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5. Treatment

*Treatment


4.2 Technology and/or marker evaluation with respect to fundamental parameters of method





4.1 Research into triple negative breast cancer

4.3 Finding better ways to screen for breast cancer that would improve on mammography

4.3 Finding ways to detect breast cancer that cause less discomfort for women and give clearer results

5.1-5.5 Research on the treatments for cancer that spreads to other parts of the body (metastatic breast cancer)

5.1 Research into triple negative breast cancer

5.1/5.2 Research on new therapies (such as vaccines and gene therapies)

5.1/5.2 Research on new ways to do surgery and radiation treatments


5.1/5.2 Research on new therapies (such as vaccines and gene therapies)

5.1/5.2 Research on new ways to do surgery and radiation treatments






5. Treatment (cont)

*Treatment







5.3/5.4 Research on hormonal therapy (such as tamoxifen)

5.3/5.4 Better targeted drugs and treat-ment/less side effects/less toxic-harsh


5.3/5.4 Research on hormonal therapy (such as tamoxifen)

5.3/5.4 Better targeted drugs and treat-ment/less side effects/less toxic-harsh


5.6 Complementary /alternative thera-pies (acupuncture, massage, natur-opathic, herbal, meditation, blending Eastern and Western medicine)




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6.2 Surveillance

6.3 Behavior

6.1 Research on more aftercare /post-discharge support/physio referral, brief follow up even after five year mark

6.1 Research on ways to manage pain

6.1 Research on ways to reduce pain and swelling in the treated area (after cancer treatments or surgery)

6.1 Research on treatment of lymph-adema

6.1 Research on the support that women need during the course of their disease

6.1 Research on psychosocial and sup-port in general; stress management, mental health issues

6.1 Research on family support, care-giver support, support for men

6.1 Research on financial issues/aid (e.g. child care; employment insurance)

6.1 Research on greater understanding of impact on sexuality, body image, self esteem after mastectomy, sex drive

6.1 Research on longer term survivor-ship issues; reintegration in general

6.1 Research on giving women a bigger role in their own recovery

6.1 Research on understanding the impact of breast cancer on women by development stage









6.4 Research on issues in smaller or isolated communities (second opinion, waiting time, lack of personnel, out-dated equipment)

6.4 Research into plans and policies that will ensure there are enough trained health care professionals for treatment and support

6.4 Research that helps to define the best balance of prevention, treatment, support, and end-of-life care in each community

6.4 Research on ways to ensure that care is provided at all levels of the health care system

6.4 Research on screening/getting a diagnosis for young women (under 40, under 50)

6.4 Research on amount of time be-tween initial diagnosis and treatment

6.4 Research on different models of care: more coordination or communica-tion between players and in hospitals; more clinical teams and less individual physicians (fewer opportunity for mis-takes; opportunity for second opinion)

6.5 Need for more education of young women/pre-menopausal about breast cancer

6.5 Education of the public about the disease, prevention and its risk factors

6.5 Reminders/ information to people to go for testing; educating people specifically about self-exams/testing

6.5Knowledgelevelofhealthcareprofessional (e.g. teach basic facts detection methods, risks for young women, alternative therapies)




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¹ The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp).

² The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.

³ Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.





6.5 Research on ways to keep health care providers up-to-date on the best treatment and support methods

6.5 Better and more sensitive com-munication to patients (e.g. surgeon to patients; clear statistical information; less technical and more humane); time to explain feedback from all tests, more trust in women’s judgment

6.5 Access to accurate/ less contradic-tory information (via the Internet, other means); more plain language informa-1tion; more stats available to the public




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Summary of Canadian Breast Cancer Researcher Priorities

1- Introduction

CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has undertaken and documented a number of data gathering activities including two specific initiatives designed to determine breast cancer research priorities, one hosted by CBCRA in December 2006 and the other hosted by NCIC in May 2007.

2- Overview of Findings

Somewhat similar approaches were taken in each case: attempting to define the state of knowledge and important considerations and then bringing together a group of wise individuals to determine priorities. Details of the methodology and limitations of both studies, together with the results are included below. The results have also been re-classified according to the Common Scientific Outline (a classification system organized around seven broad areas of scientific interest in cancer research, developed by the International Cancer Research Portfo-lio, a joint initiative of International Cancer Research Funding Organizations) and are displayed in the attached summary table.

i] CBCRA: Strategic Research Agenda Workshop (SRAW) - December 2006Seventy-two participants gathered together to identify the research priorities likely to have the most impact on breast cancer in the near future. 19 such research priorities were identified.

MethodologyIn preparation for the workshop, CBCRA’s Research Advisory Committee members and other experts in specific areas of breast cancer research were asked to prepare summary documents describing the “State of the Union” in breast cancer research in each of eight key areas. The workshop began with two keynote addresses on the current state of breast cancer research and the accomplishments of CBCRA since its inception in 1993.

In the first half of the workshop, participants were divided into discipline-specific groups and tasked with identifying (1) the key opportuni-ties, barriers and gaps to be considered by CBCRA in developing its future research agenda and (2) the key research themes that should be addressed by research in the future.

In the second half of the workshop, participants were divided into interdisciplinary groups and asked to refine the research priorities identi-fied above and to present a short list of five priorities to all participants, who then designated their top three priorities by vote. This process led to the identification and ranking of 19 future research priorities, listed below.

Although every attempt was made to include participants from all areas of breast cancer research in addition to breast cancer stakeholder and survivors, the findings obtained are a direct reflection of the areas of expertise of the individuals who participated, and a different group of participants might have led to slightly different results.

Results:The following 19 Strategic Research Priorities were identified during the Strategic Research Agenda Workshop (SRAW):

1- Biomarkers Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression 2- Breast Cancer Subtypes Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations 3- Lifestyle Changes In Look at particular subpopulations and how the lifestyle changes that they undergo influence their Subpopulations breast cancer risk4- Screening Tools For High Development of sensitive, specific, accessible, cost effective screening tools to identify women Risk Women with high risk 5- Early Detection Of Metastatic Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent Disease


6- Animal Models Of Breast Develop better animal models for breast cancer progression Cancer Progression7- KnowledgeTransferInterventions Increaseknowledgeaboutinterventions,whatworks,whatdoesn’t,studiesofuptakeand effectiveness on the interventions where evidence exists8- Breast Cancer Heterogeneity Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale 9- Microenvironment Of Metastatic Therapy for metastatic breast cancer targeted at interaction between tumour and its Breast Cancer microenvironment 10- Health Care Delivery How is care currently being delivered? Are we doing the things we ought to do?11- Inequities Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators12- Survivorship Interventions Survivorship: better understanding of issues and design of interventions13-KTProcesses WhatarethebestKnowledgeTranslationprocessesindifferentsettings,inordertoinfluence practices, policies?14- Phase I And II Intervention Trials Focus on multi-centre Phase I and II trials to test novel paradigms for intervention15- Lifestyle Influence On How do nutrition/lifestyle/natural remedies influence cancer formation, cancer progression and Breast Cancer effectiveness of therapy at the molecular level?16- Molecular Pathology Platforms Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform17- Clinical Prevention Trials In Clinical prevention trials in genetically high risk women High Risk Women18- Exposure To Risk Factors Biomarkers of exposure to risk factors (environment) through long term cohort studies 19- Ability To Metastasize Does the ability to metastasize develop during growth at the primary site?

The complete proceedings of this workshop are posted on the CBCRA website.

ii] The National Cancer Institute of Canada (NCIC): Breast Cancer Research Summit May 2007NCIC’s strategic plan, approved in June 2005, requires the organization to periodically review its research portfolios to determine future directions and priorities. As part of such a review of its breast cancer research portfolio, a series of key informant interviews were con-ducted together with a two-day meeting in early, 2007. Limitations to the findings include the recognition that in the timeframe in which the process was conducted, the appropriately broad and representative cross-section of the breast cancer researcher community was not available. Some participants were both interviewed and participated in the meeting – and no attempt was made to control the weighting of their data in the final analysis. Finally, within the meeting, the small group discussions were very different, resulting in concerns that perhaps the understanding of the exercise was not shared.

Methodology:Participants in both the key informant interviews and the research summit were chosen for their ability to represent different aspects or components of the breast cancer research community: breast cancer areas, clinical settings, policy/advocacy arenas and survivors.

A total of 31 structured phone interviews were conducted with a purposeful sample of researchers, clinicians, policy makers, survivors and funders. The interviews consisted of six open-ended questions designed to identify directions in breast cancer research over the next 10-15 years as well as current opportunities and/or barriers. The same two interviewers created a coding framework, refined through several iterations and then one interviewer coded all the interviews and summarized the themes identified by interview question and by major coding framework theme.

The summit, attended by 22 participants, began with a series of presentations designed to provide background information and context to seed the discussions. The presentations provided context for breast cancer research funding in Canada as well as an example of how a California breast cancer research funding agency had identified its strategic focus. Roundtable discussions were then held to identify research breakthroughs, barriers and the ‘low hanging’ fruit that, if funded, would lead to rapid results.

Conversations at the Summit were analyzed, and then findings compared and contrasted with those of the key informant interviews.


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Results:The following three clusters of priorities emerged as being of importance to both key informants and summit participants. A fourth generic cluster has also been created to capture miscellaneous common areas of concern/importance:

1- Prevention 1.1 Behavioural interventions to reduce risk 1.2 Pharmaco-prevention 1.3 Studies on the role of the environment 2- Early detection and treatment 2.1 Targeted therapies: smaller populations for treatment sparing and reduced toxicity 2.2 Tailored or combination therapies for treatment sparing and reduced toxicity 2.3 Advances in basic research (understanding genetic interactions and biological pathways and the identification of biomarkers) were described as key to developments in detection, diagnosis and treatment 2.4 Molecular specificity and functionality : knowing if cancer exists, the behaviour pattern of the tumour, and what therapies, if any, are required 2.5 Screening tools and process: diagnostic sparing. Two tier to identify high risk candidates first/approach to triage3- Survivorship 3.1 Evidence-based holistic support to encompass whole individuals based on evidence (integrating psychosocial, financial, treatment, etc) 3.2 Post-treatment complications, both medical and non-medical. Managing long term morbidity. 3.3 Improved understanding of tumour dormancy 3.4 Identification of support required at time of diagnosis, during and after treatment and long term, i.e. across the spectrum.4- Other 4.1 Breast cancer modeling 4.2 Molecular imaging 4.3 Target marginalized and subpopulations for prevention, detection and treatment 4.4 Exploit Canadian resources e.g. tumour banks, correlative studies. Coordinate databases and making them more accessible. 4.5 Need to make the clinical trial system more effective and faster, e.g. by creating a central ethics board, blending Phases I and II, blending Phases III and IV, increasing enrolment, modernizing collection of tissue and blood, providing support to cor relative studies. 4.6 Move beyond descriptive Quality of Life studies and undertake intervention research 4.7 Uptake and translation from laboratory to clinic


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Research Priorities Identified by Researchers

1. Biology




2. Etiology










7.1 Animal models of breast cancer progression (#6)

7.1 Breast cancer modeling

7.3 Translation lab-clinic



2.3 Interactions of genes and/or genetic polymorphisms with exog-enous and/or endogenous factors


2.1/2.3 Exposure to risk factors (#18)

2.1/2.3 Exposure to risk factors (#18)

2.1 Environmental/ occupational exposure

2.4 Epidemiological resources pertaining to Etiology


1.4 Early Detection of Metastasis Disease (#5)

1.4 Ability to metastasize (#19)

1.4 Tumor dormancy




CSO Code³

CSO Code³

CBCRA Strategic Initiative Priorities(2006 SRAW)4


NCIC Summit Priorities(2007)



CSO Code³CBCRA Strategic Initiative Priorities(2006 SRAW)4



3. Prevention

*Prevention *Treatment





3.3 Chemoprevention

3.4 Vaccines



3.1/3.2 Lifestyle changes in subpopulations (#3)

3.1 Lifestyle influence on breast cancer (#15)

3.1 Exposure to risk factors (#18)

3.3 Clinical prevention trials in high risk women (#17)

3.1 Environmental/occupational exposure

3.1 Behavioural interventions to reduce risk

3.3 Pharmaco-prevention



4.2 Technology and/or marker evaluation with respect to fundamental parameters of method



4.1/4.2 Biomarkers (#1)

4.1 Breast cancer subtypes (#2)

4.1 Breast cancer heterogeneity (#8)

4.1/4.2 Biomarkers (#1)

4.2 Lifestyle influence on breast cancer – effectiveness of therapy (#15)

4.3 Screening tools for high risk women (#4)

4.4 Molecular pathology platforms (#16)

4.1 Targeted and tailored therapies

4.1/4.2/4.3 Advances in basic research



4.3 Molecular imaging

4.4 Screening tools and process

4.4 Tumour banks and databases




CSO Code³

CSO Code³






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5. Treatment

*Treatment








5.1-5.5 Microenvironment of metastatic breast cancer (#9)

5.1/5.2/5.3/5.4 BC subtypes (#2)


5.1/5.2/5.3/5.4 Breast cancer subtypes (#2)

5.1/5.5 Microenvironment of metastatic breast cancer (#9)




5.4/5.7 Phase I and II interven-tion trials (#14)

5.1/5.5 Microenvironment of metastatic breast cancer (#9)

5.4/5.7 Phase I and II intervention trials (#14)

5.2/5.4 Targeted and tailored therapies

5.2/5.4 Advances in basic research

5.2/5.4 Molecular specificity

5.2/5.4 Targeted and tailored therapies

5.2/5.4 Advances in basic research

5.2/5.4 Molecular specificity

5.7 Tumor banks and databases

5.7 Clinical trials







*Supportive care *Palliative care



6.2 Surveillance

6.3 Behavior






6.9 Resources and infrastructure related to cancer control, survivor-ship and outcomes research

6(all)KTofintervention(#7)

6.1 Survivorship interventions (#12)




6.4 Health care delivery (#10)

6.4/6.5/6.7 Inequities (#11)

6.4/6.5KTprocesses(#13)


6.4/6.5/6.7 Inequities (#11)

6.4/6.5KTprocesses(#13)



6.4/6.5/6.7 Inequities (#11)



6.1/6.4 Evidence-based support

6.1 Post-treatment complications

6.1/6.3/6.5 Support across the spectrum

6.1/6.4/6.5 Target sub-populations

6.1/6.3/6.6/6.8/6.9 QoL intervention research



6.1/6.4 Evidence-based support








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(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)(2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.(3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details (4) The following 19 Strategic Research Priorities were identified at CBCRA December 1-2, 2006 Strategic Research Agenda Workshop (SRAW). In the table above, the number in parenthesis indicated the ranking of the priority.

1- “BIOMARKERS”: Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression

2- “BC SUBTYPES”: Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations

3- “LIFESTYLE CHANGES IN SUBPOPULATIONS”: Look at particular subpopulations and how the lifestyle changes that they undergo influence their breast cancer risk

4- “SCREENING TOOLS FOR HIGH RISK WOMEN”: Development of sensitive, specific, accessible, cost effective screening tools to identify women with high risk

5- “EARLY DETECTION OF METASTATIC DISEASE”: Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent

6- “ANIMAL MODELS OF BC PROGRESSION”: Develop better animal models for breast cancer progression

7- “KT INTERVENTIONS”:Knowledgetransfer:Increaseknowledgeaboutinterventions,whatworks,whatdoesn’t,studiesofuptakeand effectiveness on the interventions where evidence exists

8- “BC HETEROGENEITY”: Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale

9- “MICROENVIRONMENT OF METASTATIC BC”: Therapy for metastatic breast cancer targeted at interaction between tumor and its microenvironment

10- “HEALTH CARE DELIVERY”: How is care currently being delivered? Are we doing the things we ought to do?

11- “INEQUITIES”: Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators

12- “SURVIVORSHIP INTERVENTIONS”: Survivorship: better understanding of issues and design of interventions

13- “KT PROCESSES”:WhatarethebestKnowledgeTranslationprocessesindifferentsettings,inordertoinfluencepractices,policies?

14- “PHASE I AND II INTERVENION TRIALS”: Focus on multi-centre Phase I and II trials to test novel paradigms for intervention

15- “LIFESTYLE INFLUENCE ON BC”: How do nutrition/ lifestyle/ natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level?

16- “MOLECULAR PATHOLOGY PLATFORMS”: Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform

17- “CLINICAL PREVENTION TRIALS IN HIGH RISK WOMEN”: Clinical prevention trials in genetically high risk women

18- “EXPOSURE TO RISK FACTORS”: Biomarkers of exposure to risk factors (environment) through long term cohort studies

19- “ABILITY TO METASTASIZE”: Does the ability to metastasize develop during growth at the primary site?


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“State of the research” in: Breast Cancer Early Detection

Prepared by: Dr. Martin YaffeSenior Scientist, Department of Imaging Research Sunnybrook and Women’s College Health Sciences Centre, Toronto, ON

January 2008

Developments in imaging

•Digitalmammography(improveddetectionforwomenunderage50andthosewithdensebreasts) • Improvedevidenceofthemortalityreductionfromscreeningwomenintheir40swithmammography (Coldman et al. BC Screening Program) • BreastMRI(anaccurateandeffectivewaytoscreenwomenwhoareathighhereditaryrisk • PETCTforplanningtherapy • Betterunderstandingoftheroleofbreastdensity • Needtodevelopoptimalscreeningstrategies • EmergenceofbreastCTandtomosynthesis–techniquestoprovide3-dimensionalbreastimages • Researchonimagingmethodstoassessresponseoftumourstoneoadjuvanttherapy

Molecular targeting

• Manymarkershavebeenidentified • Preclinicalworktocreatetoolsfordetection • EmergenceofCanadianresearchprogramstodevelopmolecularimagingforbreastcancerdetectionanddiagnosis


“State of the research” in: Breast Cancer Epidemiology and Prevention

Prepared by: Dr. Norman BoydSenior Scientist, Division of Epidemiology, Statistics and Behaviour, Ontario Cancer Institute, Toronto, ON

January 2008

• Theepidemiologyofbreastcancerhasshownthatthediseasehasbothenvironmentalandgeneticcauses,that“hormonal” exposures are important, and that some drugs can reduce the frequency of the disease.

• Environmentalcausesareshownbythewideinternationalvariationindiseaserisk,andbychangingratesofdiseasein migrants. The study of environmental causes is hampered by difficulties in measuring potentially relevant exposures. It has been suggested that priority areas for research include: 1) the development of methods to assess nutrient intake, energy expenditure, and intermediate markers; 2) the enhancement of cohort and cross-cultural studies; and 3) the development of criteria for the development of full-scale intervention trials (1). Few risk factors for breast cancer can be changed, but body weight, diet, alcohol intake, hormone use, and mammographic density, are examples of some that can.

• Familyclusteringofthediseasesuggestsgeneticcausesofbreastcancer.Somegeneswithstrongeffectsonriskhavebeen found, but they account for a small proportion of the disease. It is theoretically possible that a relatively small genetically pre disposed section of the population accounts for most cases of the disease, and some genes of low penetrance have now been reproducibly identified as associated with the disease. Gene-gene and gene-environment interactions may also be important in causing breast cancer, but are not well understood, and their study requires very large study populations, as well as resolution of the problems in measuring environmental exposures referred to above.

• “Hormonal”events,suchasmenarche,parityandmenopause,influencebreastcancerrisk.Mostattentionhasbeenfocused on estrogen, and higher levels are associated with a modest increase in risk of breast cancer in pre and postmenopausal women. Several other hormones, including prolactin and the growth-hormone-IGF axis, may be involved. Little is known about the factors that regulate levels of exposure to any of these hormones.

• Tamoxifenandraloxifenehavebeenshowntoreducethefrequencyofbreastcancerinselectedpopulations,butconcerns about safety have limited their use to date.

(1) Prentice RL et al. Nutrition and physical activity and chronic disease prevention. J Natl Cancer Inst 2004, 1276-87.


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“State of the research” in: Breast Cancer Knowledge Translation, Health Services, Policy and Ethics

Prepared by: Dr. Eva GrunfeldDirector, Health Services and Outcomes Research, Cancer Care Nova Scotia, Halifax, NSand Dr. Lisa SchwartzAssociate Professor, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON

January 2008

Breast Cancer and Policy:

• Resourceallocation: • Waitingtimes:50%had34+daysfromdiagnosistosurgery(NancyMayo) • Organizationanddeliverygapsandcompetition • Impactoffee-for-servicemammographyprograms(HeatherBryant) • Moreneedstobedonetoorganizeandinformbetteraccesstocare. • Gapsinservicesforpatientswithadvancedbreastcancer. • Theethicsofbreastcancerfunding(e.g.,forprofitorganizations).

Disparities and the Social Determinants of Health:

• Continuedconcernsaboutdisparitiesinaccessandoutcomerelatedto: • Raceandethnicity • Geographiclocation(KevinGorey;NicoleHébert-Croteau) • Socio-economicstatus(JaneAngus) • Womenwithcognitivedisabilities • FirstNationscommunities. • VariationinrateofmastectomiesacrossOntarioforwomenwithDCIS(EileenRakovitch) • Globalhealthdisparitiesandbreastcancercareinlimitedresourcecountries • Advocacy • Theethicsofbreastcanceradvocacyandrelationshipswithpharmaceuticalindustry(SharonBatt).Costsandlossesto women with breast cancer

Health Technologies Assessment (HTA):

• Healthtechnologyassessmentandevaluationoftreatmentoptions(cost-effectiveness,qualityoflife;e.g.ofbreast conserving therapy and of adjuvant therapy; DCIS treatment. • Herceptinuseanddrugfunding(TimothyWhelan) • Mammography:population-basedstudyoutcomes;valueinsurveillance(LarryPaszat;JacquesBrisson) • Radiationtreatmentschedules;effectivenessofacceleratedpartialirradiation(TimothyWhelan) • Mammographysurveillanceafterbreastreconstruction(PhilipBarnsley,EvaGrunfeld,LarryPaszat)

Public Health:

• ValueofPublichealthinscreeningandeducation;communicatingdietaryprevention(C.Rand). • Impactofenvironmentalcontaminants • Communicationofpublichealthmessages

Genetics:

• Genetictesting(andprivacy;heritabilityandchoice) • Screeningbehavioursoffamilymembers(AnnaChiarelli)


• Geneticpatenting • SpecialinitiativeofCIHRInstituteofGeneticsandInstituteofHealthServicesandPolicyResearchongenetictesting • GoalsoftheINterdisciplinaryHEalthResearchInternationalTeamonBReastCAncersusceptibility(INHERITBRCAs): (a) To estimate the prevalence and penetrance of BRCA1 and BRCA2 mutations and their deleterious impact upon different populations (b) To pinpoint novel breast cancer susceptibility loci (c) To assess the efficacy of clinical interventions (d) To address changes in quality of life and health-related behaviour from the decision to undergo genetics testing and during follow-up (e) To evaluate legal, social and ethical implications (f) To promote professional and public education by facilitating the transfer of research findings to clinical practice and informing policy makers. The lessons learned by the INHERIT research team and future challenges are presented in Avard et al. in: Partnering in oncogenetic research-the INHERIT BRCAs experience: opportunities and challenges. Fam Cancer. 2006;5(1):3-13. • Impactofhealthbasedsocialmovementsonpolicy,accessandresearch

Health Services:

Prevention and prevention strategies: • Cost-effectiveness(AnnaChiarelli);preferences;uptake;fee-for-service(HeatherBryant) • Dietandlifestyles • Abortionandbreastcancerlink Diagnosis and Screening: • Screeningandmammography:howitisorganizedandhowitischanging • Re-screeningbehaviourandagelink(MarciaJohnson) • Roleofultrasonography • Over-diagnosis • DuctalCarcinomaInSituscreening,diagnosisandfollow-up(EileenRakovitch) • Addressingdelaybetweenmammographyanddiagnosis(GregoryHislop) • Impactofdirecttoconsumermarketingofscreening • Patientpreferencesforscreening • MRIs(MartinYaffe) Treatment (surgery, radiotherapy, chemotherapy): • Guidelineadherenceandstandardsofcare(SteveLatosinsky) • Valueofmultidisciplinarycareinbestpractice • Primarycarebreastcancertreatment(EvaGrunfeld) • Complementarytherapies:attitudesregardingintegration(LyndaBalneaves);reasonsforaccess(MoiraStewart);therapeutics (Linda Carlson) • Treatmentcoststopatientsandfamilies(ElizabethMaunsell) • On-linecaredeliveryprojects(DavidWiljer) • Guidelinesonassociatedspinalfracturemonitoring(C.Whyne) • Adjuvantsystemictherapy(MarkLevine,KathyPritchard,PaulGoss,M.Brunell) • Adjuvantradiationtherapy(TimothyWhelan,IvoOlivotto) Survivorship: • Associatedandlong-termhealthofsurvivors(EvaGrunfeld;ElizabethMaunsell;LarryPaszat,PamelaGoodwin). • Transitiontoprimarycare(EvaGrunfeld) • Followupstrategiesandpatternsofcare(EvaGrunfeld) • Valueofexercisefollowingtreatment(SusanHarris,RoanneSegal) • Relationshipbetweenexerciseanddiet(weightcontrol)onbreastcanceroutcomes(RoanneSegal,KerryCourneya, Pamela Goodwin) • Stressreductiontechniques(LindaCarlson) • Treatmentofinsomnia(JoseeSavard) • Psychosocialfunctioning(MaryJaneEsplen) • NCIC/CCSidentifyingsurvivorshipasoneofthepriorityareasfordevelopment.


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End-of-life care: • Qualityindicatorsofend-of-lifecare(EvaGrunfeld) • Accesstoandutilizationofsupportivecare(RossGray) • Palliativeandend-of-lifecareindicators(EvaGrunfeld) • Costsofendoflifecareandfamilycaregiverburden(EvaGrunfeld)

Qualitative Studies: • ExperienceofmembersofFirstNations(RoanneThomas-McLean;JenniferPoudrier) • Informalcareers:informationalneeds(EvaGrunfeld) • Impactonfamiliesincludingcostsofcareandwageloss(ElizabethMaunsell) • Involvingusersinserviceplanning • Communication(TomHack)

Research ethics:

• Tissuebanking(LisaSchwartz,OntarioInstituteforCancerResearch) • Patientpreferencesforparticipationinresearch • Accesstopersonalhealthinformationforresearch;reliability(ElaineWai) • Informingparticipantsoffindingsandlist-orblog-mining

Notes: The term “user” tends to be preferred over the term “patient” by researchers in these fields; Names of CBCRA-funded researchers are indicated in parenthesis


State of the research” in: Breast Cancer Molecular Biology and Signal Transduction

Prepared by:Dr. John HassellProfessor, Department of Biology, McMaster University, Hamilton, ON and Dr. Jim WoodgettSenior Investigator, Director of Research, Samuel Lunenfeld Research Institute, Toronto, ON

March 2008

Progress and Opportunities:

1. Emerging role of breast cancer stem cells in cancer initiation, progression and metastatic potential, and the implication of the existence of these cells for treatment. Are we targeting the right cells and judging clinical success by the right criteria?

2. Identification of predictive genes, miRNA and protein signatures and biomarkers of breast cancer progression (metastasis) and treatment. Based on this knowledge, there will be considerable development and validation of new predictive tests.

3.Keysignalingpathwaysdysregulatedinbreasttumorshavebeenidentified.Theemerginguseofhigh-contentscreensto identify synthetic lethal combinations of therapies selective for tumour cells with defined activation of pathways offers the promise of tailored and less toxic therapies.

4. We now recognize the importance of breast tumor heterogeneity and its implications for treatment regimens. This is leading to the development of sophisticated animal models that reflect the stratification of human disease and considers the importance of processes such as epithelial to mesenchymal transitions (EMT) in disease etiology.

5. High throughput datasets of protein expression coupled with bioinformatics analysis is leading to identification of novel therapeutics and therapeutic/diagnostic combinations based on intelligent targeting of pathways and processes dysregulated in breast cancer.


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“State of the research” in: Molecular Pathology

Prepared by Dr. David HuntsmanAssociate Professor, Department of Pathology and Laboratory MedicineUniversity of British Columbia, Vancouver, BC

Updated March 2008

Molecular profiling of breast cancer (biological, prognostic and predictive): How do we move toward refining the current classification (basal, luminal, Her-2, etc.)?

Predictive classifiers: Can we leverage our clinical trials successes into international leadership in predictive oncology? How can we move toward cutting edge research that will change the way the disease is currently being managed?

Surrogate markers for patient response: Primary culture from breast cancers, circulating tumour cells etc. Are these the future of pathology?

Pharmacogenomics (germline determinants of patient response): Single SNP versus whole genome analysis.

Molecular pathology meets epidemiology: Moving beyond generic cancer risk factors by bringing molecular classifiers into classic and genetic epidemiology study design and analysis. Different subtypes of breast cancer could have different etiologies and risk factors, and molecular pathology needs to be incorporated into epidemiologic studies. Such studies without pathology subtyping are likely to become too naive to be useful in the future.

Pathology meets diagnostic imaging: The development of a coordinated approach for the analysis and validation of high resolution images.

Proteomics is an emerging technology and it will be some time before the technology is easy to use.

Clinical deployment of biomarkers: improving the delivery of standard biomarkers, incorporating new biomarkers into standard practice, developing new strategies for integrating multiple pathology data types (from standard microscopy to gene chips) into a usable reporting structure for treatment decisions. Current barriers include lack of training in this area, insufficient knowledge translation and inadequate policies.

New technologies: can a risk adverse community lead? The pathology community is not engaged enough in research, although this is a unique and exciting time where pathology could play a major role in cancer research.

Without national collaboration will we have the scale to produce meaningful research? If new research identifies new subtypes of breast cancer to be different diseases, then inter-institutional collaborations will be needed to generate cohorts of subtypes with reasonable size.


“State of the research” in: Breast Cancer Psychosocial Oncology

Prepared by: Dr. Tom HackAssociate Professor, St Boniface Research Centre, Winnipeg, MBand Dr. Mary Jane EsplenHead, Program of Psychosocial and Psychotherapy Research in Cancer GeneticsToronto General Research Institute, Toronto, ON

January 2008

• Theproliferationoftreatmentsforbreastcanceroverthepastdecadehasmadeitmorechallengingforwomendiagnosed with early stage disease to decide on their treatment. The Internet has enhanced a patient’s ability to access relevant illness and treatment information. This mass of available information includes erroneous facts, making it challenging for some women to get accurate information. Evidence-based decision aids and preparatory information packages are on the rise to help women become better informed treatment consumers.

•Onlyinthepastfewyearshastheextentofarmmorbidityfollowingbreastcancersurgeryandnodaldissectionbeen systematically documented. These studies have demonstrated that morbidity is common and persistent. Sentinel node biopsy may help to reduce this morbidity.

• Theclinicalpracticeofpsychosocialoncologyhasexpandedincancercentresacrossthecountry,asdistressscreeninghas documented a need for supportive counseling through-out the illness trajectory. Not all centres, however, are equipped for adequate screening or yet incorporate evidence-based psychosocial counseling.

• TheHumanGenomeProjecthasresultedinopportunitiesforidentificationofindividualsandfamiliesathighriskforcancer. Genetic counseling and testing is a particular area of growth, both in terms of service and research. While genetic counseling services are well-established in most centres, there continues to be a need for the development and testing of psychological approaches and decisional aids to assist individuals at risk for cancer comprehend and manage their cancer risk.

• Manypromisinginterventionshavebeendevelopedoverthepastfewyears(e.g.,distressscreening,behavioralinsomnia remedies, group psychotherapies and psychoeducational programs, exercise regimens, decision aids), and the renewed interest in knowledge translation has sparked concern that promising psychosocial interventions are not reaching eligible patients.

• Thepsychosocialneedsofminoritybreastcancerpopulations(e.g.youngwomen;womenfromruralsettings;culturalgroups; those seeking complimentary therapies) in Canada are not well understood, and targeted services based on solid research findings are lacking.

• Therearesomeemergingfindingsoninterventionsgearedtowardsfamiliesandcouples,however,therecontinuestobealack of resources and integration of empirically-based services in this area.

•Whiletherearecurrentlyevidence-basedprogramsandinterventionstoprovidegeneralpsychosocialsupporttopatients, there are areas requiring further research, including specialized treatments to address alterations in body image and impact on sexual functioning.


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“State of the research” in: Breast Cancer Treatment and Clinical Trials

Prepared by: Dr. André RobidouxProfessor, Comprehensive Breast Cancer Research Centre, CHUM- Hôtel-Dieu, Montreal, QC

January 2008

Targeted Therapy • DualinhibitionofHER2pathwayinneoadjuvantandadjuvanttherapyofbreastcancer •Roleofpartialbreastirradiationcomparedtoconventionalwholebreastirradiationinstage0,IorIIbreastcancer • RoleofTrastuzumabgivenconcomitantlywithradiationtherapycomparedradiationtherapyaloneforwomenwithHER2 positive ductal carcinoma in situ • Assessmentofclinicalcancerteststrialassigningindividualizedoptionsfortreatmentofbreastcancer

Endocrine Therapy of Breast Cancer • Completeblockadeoftheestrogenreceptorpathwayandpredictivebiomarkersofresponsetoendocrinetherapy • Optimalroleanddurationofaromataseinhibitorsinadjuvanttherapyofbreastcancer • Roleofthepureanti-estrogensERdownregulatorsincombinationwitharomataseinhibitorsinneoadjuvantandadjuvant therapy of breast cancer • Roleofovariansuppressionwithtamoxifenintheadjuvanttherapyofbreastcancer •Whatarethegeneticmarkersofendocrineresponseandtheirroleinthepredictionofresponsetoacombinationofchemo therapy and endocrine therapy in hormone receptor positive patients

Multiple Target Therapy

• Targetedtherapy • Tailoredtherapy

• Predictivebiomarkersofendocrinetherapy

• CompleteblockadeofHER2andestrogenreceptorpathway

• Angiogenesisinhibitioninbreastcancer:RoleofBevacizumab

• Dualtyrosinekinaseinhibitors

• Combinedendocrinetherapy

• Optimaldurationofaromataseinhibitors

• Roleofchemotherapyfollowingmastectomyforisolatedbreastrecurrence

• Optimizationofneoadjuvanttherapytoincreasepathologicalcompleteresponseandidentificationofpredictorsofhigh likelihood for pathologic response in the breast and nodes


“State of the research” in: Breast Cancer Tumour Microenvironment and Metastasis

Prepared by: Dr. Shoukat DedharSenior Scientist, Cancer Genetics and Developmental Biology, BC Cancer Research Centre, Vancouver, BC

January 2008

1. Historically, research has been focused on “individual breast tumour cells” • Identificationofoncogenesandtumoursuppressorgenes • Generationofnovelreagentsthattargetbreastcancercell;e.g.,Herceptin,Tamoxifen,aromataseinhibitors

Recently: Research focus is on the tumour as “an organ” • Tumourisnotamassofautonomouscells • Therearemanyinterdependentcelltypes • Therearebidirectionalanddynamicinteractionswiththestroma • Tumouranditsstromamayco-evolveduringtheinitiationandprogressionofbreastcancer

2. “Stroma” has several components: • Cellular:Resident:fibroblasts,endothelialcells,nervecells,musclecells Infiltrating: inflammatory cells, immune cells, endothelial cell precursors • Structural:ExtracellularMatrixcomponents • Molecular:Cytokines,growthfactors,proteases,ECMfragments,

Stroma are “Organ Specific” and may have significant impact on the establishment and growth of organ-specific breast cancer metastases

3. Microenvironment influences breast tumour growth at all stages a) Pre-malignant and early cancer: • Stromamayfacilitategrowthofpre-malignantcellsandtheswitchtomalignancy(e.g.,theangiogenicswitch) b) Tumour progression and Metastasis: • Inflammationcanmodulateprogression. • Proteasesandcytokinesmediateinvasion,angiogenesisandmetastasis • Organspecificmetastasisismediatedbycytokines,growthfactorsandECMproteins

4. Tumour microenvironment can be a novel target for therapeutics a) Stroma may contribute to morbidity and drug resistance b) Tumour cells need stromal components for growth and metastasis: stromal targeting agents: Velcade, Avastin c) Stromal cells show genetic and epigenetic changes at various stages of cancer: potential targets d) Tumour-reactive stroma: What are the alterations? Can it be targeted?

5. Drug discovery of breast cancer is carried out using models of primary breast cancer. Models of metastatic/systemic breast cancer should be developed and used for more effective treatment of breast cancer


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Summary of Canadian Breast Cancer Research System Gaps

1- IntroductionCBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has undertaken a number of data gathering activities to identify what a range of stakeholders believe to be the most important breast cancer research priorities at this time. For research to be successful, the system1 that underlies it needs to provide the necessary resources and supports. Hence, the data gathering undertaken by CBCRA also sought to identify the systemic changes required in order for the national breast cancer research framework to be implemented successfully.

2- MethodologyStakeholders were asked to identify what they saw as being the key gaps and barriers to the conduct of successful research moving forward. These questions were posed in different ways to the different stakeholder groups, depending on the nature of the data gathering exercise. Specifically: Researchers2: •AttheCBCRA’sSRAWworkshop,inbothdisciplinespecificaswellasinterdisciplinarygroups,researchersidentifiedsystem gaps and barriers •AttheNCICSummit,duringtheinterviewsandthein-persondiscussions,gapsandbarrierswereidentified •AFocusGroupwasheldbyCBCRAinNovember,2007specificallytoaddressthisquestion.14seniorinvestigators,across the research spectrum and from across the country attended a dinner meeting chaired by Dr Martin Yaffe to identify research system gaps and areas where Canada is internationally competitive in breast cancer research. System gaps identified were classified into four categories: funding, infrastructure, capacity and relationships between funders and researchersSurvivors: •Inputwasreceivedviatwoopenendedquestions:oneaskingforadvicewithrespecttobreastcancerresearchandresearch funding and the second being the final request question requesting any additional advice/input

Policy Influencers: •Aspecificquestionwasincludedintheinterviewguide

Funders: •Theresultsfromthededicatedfocusgroupofresearchersdescribedaboveweretestedintheon-linesurvey •Aspecificquestionwasalsoincludedinthekeyinformantinterviewguide.

3- DiscussionThe attached table summarizes the major gaps identified by stakeholder group. As would be expected, the researchers – as a group – identified the most gaps given their intimate knowledge of the system and what is - and is not - currently working. The overall category with the most mentions is funding. There appear to be a number of specific types of funding that researchers particularly would welcome, with some of these gaps also being supported by other stakeholders: for example, greater equity in funding across the continuum, a gap also identified by funders and policy makers. Other areas of convergence between the different groups surveyed, include the building of researcher capacity, the funding of multi-disciplinary/team grants and the translation of research findings into practice.

While policy influencers were adamant about the need to find ways to ‘formalize and regularize’ interaction between researchers, policy influencers and other stakeholders, two other gaps attracted a great deal of comment, notably: •Theabilitytoaccesstumourbanks •Theissueofknowledgetranslationandfindingwaystoensureresearchfindingsaretakenintoaccountwhendeveloping,and improving, policy and practice.

It is interesting to observe that in some of the international studies, similar types of system issues were also documented. For example, in theUKstudy,three‘genericneeds’wereidentifiedrelatedtoinfrastructureandfunding.

1 Definition used for research system: The funding mechanisms, infrastructure requirements, key processes (such as planning and surveillance) and human resources to support a world class research enterprise

2 See Canadian Breast Cancer Researcher Priorities Summary for more details on the CBCRA and NCIC workshops


Canadian Research System Gap Analysis

The table below captures the key gaps identified through the data gathering process clustered under headings to enable easy access to the key messages:

PolicyGaps Researchers Survivors Influencers FundersResearch Capacity •Currentcareerstructureforresearcherscreateslimitations x x •Buildcapacitytoleadandparticipateinmulti-disciplinaryteams x x xResearch Infrastructure •TumourBanks:bankingandaccesstopatientsamples, x x (including metastatic tissue) and the clinical data associated with them; access to tissue microarrays;– Issue of lack of funding for oversight and management of tumour banks. Need for more targeted tumour banks •Applicationofclinicaltrialinfrastructuretonewquestions/issues xFunding •Fundingforinternationalnetworks x x •Fundingforlongtermstudies,includingcohortstudies x x •Needforfundingofteam/multidisciplinarygrants x x x •Salarysupporttoallowclinicianscientiststohaveprotected x research time •Fundingforresearchonexistingcohorts x •Raisecurrentfundingceilings(especiallyforepidemiologyand x x prevention grants) •Lowerthepayline/cut-offlineonOperatingGrants x (i.e. to increase success rate) •Createmoreequityinfundingacrossthebreastcancer x x x research continuum •Fundmechanismsforbringingpeopletogetherto x x collaborate/discuss issues, including regular interaction of researchers, policy makers and stakeholders •Needformorecreativefundingapproaches xPlanning and Coordination •Needfornewwaysofdoingresearch:ofscientistsinteractingmore x and applying their knowledge/ techniques to real world issues Knowledge Exchange/Transfer •Translationofbreastcancerfindingstootherdiseasesites x •Gapsinknowledgeastothebestwaytoconductknowledgetranslation x x •Translationofresearchfindingsintopractice,includingto x x x psychosocial area and publicizing of research results •‘Regularizationandformalization’ofinteractionamongpolicy x influencers, researchers and stakeholdersCommunication •Weaknessesacrossthesystemandwiththeoutsideworld xStructure •Needforbetteralignmentacrossexistinginitiativesandacross x x provincial jurisdictions •Needforbetterlinkagewithglobalagenda/moreinternational x networks neededOther •Limitedcapacityacrossthesystemforchange x x •Studiesinspecificunderservedpopulations x x •Identificationofappropriateaccountabilitymechanisms x


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Summary of Internationally Identified Breast Cancer Research Priorities

1- IntroductionCBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has undertaken a number of data gathering activities, including reviewing the literature to identify recent attempts outside of Canada to establish breast cancer research priorities. 2- Overview of InitiativesFour initiatives were identified as having taken place in the past 18-24 months and are described below. The attached table presents a mapping against the Common Scientific Outline categories of the results of three of these consultations since the full results of the fourth have yet to be released.

(I) The Top Ten International Priorities – sometimes referred to as the St Gallen Priorities (results published by Mitch Dowsett et al., Breast Cancer Research, 2007, 9:R81)

ThisistheproductofaninternationaleffortorganizedbyProfessorMitchDowsett(RoyalMarsdenHospital,LondonUK)in2006tofindconsensus as to the key areas of translational research1 among the many clinicians and researchers around the world undertaking in-novative work in breast cancer. The overall aim of the Top Ten Programme was described formally as to ‘identify, through international consensus, the ten most important research priorities for the breast cancer community in the area of translational research, and thereby encourage the targeting of the best research to questions of the highest priority’ (Report, pg 4). The programme was designed to assimi-late the opinions and ideas from as wide an international group of concerned parties from the research community as possible. Following an informative, interactive process of amalgamation and feedback of ideas on current and prospective research activities, findings were disseminated to both the participants themselves and to the wider breast cancer community. Findings were formally announced at the St Gallen Conference in March, 2007.

Methodology:

•Theprogramwasimplemented,steeredandinformedbyanadvisorygroupofsixinternationallyrecognisedexpertsinthe breast cancer field, led by Prof. Dowsett •Intheprogramme,whichranfromOctober2006toMarch2007,theviewsandfeedbackfromtheglobalbreastcancer research community on the ten most important current research topics/questions in translational breast cancer research were elicited via email and via an interactive website •Potentialparticipantswereidentifiedfromadatabaseofmorethan4,000participantstothe2005SanAntonioBreastCancer Symposium and the 2005 St Gallen Consensus Meeting on Primary Therapy of Early Breast Cancer •Over600registrantstothewebsite,fromatotalof62countriesaroundtheworld,contributedideasforcandidateresearch topics/questions, of whom 420 participated in a voting procedure to select and rank the best ten from a total of 70 principal candidate topics/questions •Registrantswhovotedcomprisedclinicians(53%);academics(24%);researchscientists(20%);andpathologists(3%),andthe major world regions were represented in the registrants’/ voters’ countries of origin: North America (USA and Canada: 48%); Europe (32%); Asia (10%); Oceania (5%); South America (3%); Central America (1%); Africa (<1%); Latin America (0%) •Participantswhoregisteredtovotewereeachinvitedtoranktheirtenselectedresearchtopics(fromthelistof70)inorder of priority, and these votes were then used to obtain a final weighted total points score for all the topics/questions, from all voters •Voteswererecordedfrom420voters(2,520votes)from48countries,with48%ofvoterscomingfromNorthAmerica.Half of the voters identified themselves as clinicians, with the remainder being academics, research scientists or pathologists. Votes were counted and allocated scores. The scores were summed for each of the topics to create the consensus scoring •Theprogrammeculminatedintheidentificationofthetenmostimportantareasofhighestresearchpriority,selectedfromthe list of 70 specific candidate topics.

1Translational research is understood for the purposes of this report as endeavours to apply the results of laboratory studies to advance the treatment of breast cancer


Results:The top ten priorities in translational research in breast cancer were identified as follows:

#1-MolecularSignatures • Identificationofmolecularsignaturestoselectpatientswhocouldbesparedchemotherapy.

#2-OptimalChemotherapy • Identifymolecularfeatureswhichindicatetheoptimalchemotherapyregimen(e.g.,combination or sequential, anthracyclin or not, taxane or not).

#3-DCISToProgression • DeterminethefactorsinDCISand/orADHleadingtoprogressionintoinvasivecarcinoma.

#4-StemCell • Determinetheroleofstemcellsinbreastcancerdevelopment,progressionandtreatmentsensitivity.

#5-TripleNegativeBC • Identifyresponse/resistancemechanismsandtherebytherapeutictargetsfortriplenegative breast cancer.

#6-ComputerSystems • Developasystem(computeretc)thatwillintegratealltheinformationsofargatheredabout breast cancer to build robust models for understanding the aetiopathogenesis, treatment and prognosis of breast cancer.

#7-NoAdjuvantTherapy • IdentifyingwhichlowriskpatientsrequireNOadjuvanttherapy.

#8-Pathways • DetermineifothergrowthfactorpathwaysareimportanttargetsfortherapysuchasEGFR,IGFR, Notch, Hedeghog, Wnt and other angiogenic pathways.

#9-GeneMutationsResponsible • Investigatewhichgenemutationsinacancerleadtometastases. For Metastatis

#10-EndocrineResistance • Identifydrugabletargetsthatcanbedeveloped/exploitedfortherapeuticgaintoovercome primary/secondary endocrine resistance.

For additional information, see http://www.toptenresearch.org/index.html - The full text article is at: http://breast-cancer-research.com/content/9/6/R81

(II) UK Breast Cancer Research Recommendations based on a Gap Analysis: (results published by A. Thompson et al., Breast Cancer Research, 2008, 10: R26).

In2006/7,agapanalysiswasconductedamong56BreastCancerCampaigngrantholdersandotherprominentUKbreastcancerresearchers to determine which areas of breast cancer research, if addressed, could produce the greatest impact on patients.

Methodology: •InNovember2006,theresearchcharityBreastCancerCampaignconvenedapanelofleadingbreastcancerresearchers,as an initial event, to debate and identify the limitations of current research into the pathophysiology, detection, treatment, prevention and psychosocial aspects of breast cancer. The choice of participants was based on publication record, research activity and clinical stature, and selected using a database of researchers developed since the inception of the Breast Cancer Campaign in 1988. •SevenkeyresearchareaswereselectedforreviewtakingintoaccountUK,EuropeanandUSAthemesinscientificmeetings focusedonbreastcancerandUKGovernmentanalysesofresearchfundingstreams •Priortotheevent,participantswereaskedtoreviewrelevantliteratureandconstructshortpresentationssummarisingtheir areas of expertise and identifying potential research gaps. •On2November2006aone-daymeetingwasconvenedinLondon,UK.Intheinitialsubgroupsessions,eachparticipantgave a presentation to their group. Issues explored during the gap analysis were structured around the following questions: What do we already know; What are the gaps in our knowledge; What are the problems that need to be overcome to fill these gaps; What are the translational implications?


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•Thisiterativeprocesscontinuedasevidence-basedexpertopinionfromtheone-daymeetingwascross-referenced,shaped and developed during subsequent weeks. Each group formulated a summary paper for their research area, incorporating key references, which was then circulated to the participants of the respective groups for further refinement. These seven themes were collated finally into a unified position paper.

Results:

Gaps were identified in all seven themes.

General barriers to progress identified included lack of financial and practical resources (need for improved preclinical models and access to appropriate and annotated clinical material), and poor collaboration between disciplines.

The table below summarizes the gaps and recommendations in each of the seven themes.

Theme Gaps Recommendations(1) Genetics of breast cancer •DetailedunderstandingoftheactionsofBRCA1

and BRCA2 •Knowledgeoflargescalegeneticrearrange ments in tumour cells•Theimportantvariants,effectsandinteractions of low penetrance genes•Furtheridentificationofpointmutationsand epigenetic changes

•Therelationshipofsignallingpathwaysto ductal and acinar breast architecture •Theneedforwidespreaduseofmore appropriate in vivo and culture methods •Theimportanceofstromaandothercelltypes, cell adhesion and the extracellular matrix. •Understandingstemcells•Understandingmechanismsofepithelial apoptosis •Understandinghowpregnancyandfunctional differentiation in the breast protect against breast cancer •Understandingthecomplexitiesofbreast cancer intracellular signal transduction path ways, paracrine pathways, invasion, angiogen esis and metastasis including relevance of these mechanisms to clinical progression •Whetherthereareinherentlymigratorystem cells or is metastatic capacity acquired •Understandingtime-dependentprogression events, notably dormancy and reactivation of micrometastasis, at particular secondary sites •Understandingtheemergingrelationship between therapeutic resistance and metastasis •Causativefactorsunderlyingrecurrenceof DCIS or progression to invasive disease •Understandinginterplaybetweenstroma,myo epithelial and epithelial components during

•Encouragedevelopmentofresearchtech- niques to allow integrated analysis of sequence level, epigenetic and large-scale somatic changes •Engageinnationalinitiativesforactivities suchashigh-throughputre-sequencingandUK controls •Encourageresearchinvolvingintermediate phenotypes

•Developthree-dimensionalcellculture models, containing multiple cell types, that reflect the tissue architecture of the normal and diseased breast •Generatebetteranimalmodels,inwhich gene expression can be manipulated in each cell type of the mammary gland and will not be altered by transdifferentiation or dedifferentiation•Gainagreaterunderstandingofthegenetic changes that occur within atypias and DCIS

•Improvepreclinicalmodels,researchreagents and technologies (including imaging) •Enhanceaccesstoappropriateclinical material, notably matched samples during progression and sequential samples obtained during treatments including new agents •Considerthegeneticsignature/specific genetic lesions when exploring progression biology and designing clinical trials

(2) Initiation of breast cancer

(3) Progression of breast cancer


early progression and interplay between tumour cells, stroma and immune system in metastasis •Theneedforimprovedpreclinicalmodelsofthe influences of the microenvironment, site specific metastasis and dormancy •Invivoimagingtechnologiestostudythe dynamics of metastasis and relate this to signalling mechanisms, as well as means to manipulate these mechanisms to evaluate targeting potential

•Thereisanincompleteunderstandingofthe biology of breast cancer including the effects of compensatory signalling pathways responsible for drug resistance •Wecannotdeterminewhogoesontodevelop metastatic disease or drug resistant cancers •Individualizationoftherapiescouldbe improved •Theoptimaldurationoftherapyisunclearfor many drugs

•Optimumprotocolsforpathological assessment of DCIS and sentinel lymph nodes •Combiningclinical,radiological,pathological and genomic data in trial populations •Norobustvalidatedmarkershaveyetbeen developed for predicting response to chemo therapy or radiotherapy •Thereisnoconsensusformarkersindicativeof resistance to therapy •Thereisaneedforimprovedprognosticindices based on disease markers

•Thelongtermeffectsofchemopreventionof ER positive cancers are unknown •PreventionofER-negativecancersremainsa challenge •Thereisaneedtounderstandthetargetcell for breast cancer prevention •Needtoimprovecurrentriskprediction models by including modifiable risk factors •Thehealthbeliefsofhigh-riskandpopulation risk women require exploration •Theeffectsofbreastscreeningoutwith currently targeted groups is not known •Todefinedeliverabledietandexercise interventions for the primary and secondary prevention of breast cancer. •Toelucidatethemechanismforbreastcancer prevention with energy restriction

•Buildresourcesthroughhigh-quality,uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), including samples of primary tumours as well as metastatic deposits •Developmethodsforeasy,reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression•Increaseresearcheffortsintotheroleofthe tumour microenvironment and the immune system in the development and treatment of breast cancer

•Designinnovativetrialsandtranslational studies to develop and evaluate predictive and prognostic markers •Developclosemultidisciplinarycollaboration with high-quality histopathology and rigorous scientific assessments to validate new markers important for patient outcome •Identifyrobustmarkersofresistanceor sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer

•Improvebreastcancerriskpredictionmodels•Encouragetransdisciplinaryinputto prevention trials (e.g., geneticists, epidemiologists, nutritionists, psychologists and clinicians) to study the psychosocial, compliance and genetic aspects of prevention •Establishthepotentialbenefitsofdietand exercise post diagnosis on outcome and quality of life for breast cancer patients

(4) Therapies and Targets within breast cancer

(5) Disease markers of breast cancer

(6) Prevention of breast cancer


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•Evaluationofdecisionaidsforriskmanagement and choice of preventative surgery amongst high risk women. •Waysofeffectivelycommunicatinginformation and aiding patient treatment decision making •Definingpatientexperiencesinearly,chronic and end stage breast cancer •Limitedresearchintoco-morbiditiesamongst breast cancer patients •Experiencesofethnicminoritypopulationsand older women •Theneedtodevelopandevaluateappropriate psychosocial interventions for high risk women and those diagnosed as having breast cancer •Useofpsychologicaltheoriesinbehaviour change that could enhance compliance to lifestyle and chemoprevention trials.

•Developandrigorouslyevaluateappropriate psychosocial interventions •Encouragecross-specialtycollaborationto incorporate psychosocial issues and psychological theory (e.g., psychological theories in relation to behaviour change are relevant to those researching prevention with diet and exercise or chemoprevention) •Ensureresearchgivesgreaterattentiontoall stages of breast cancer and that the needs of older women and those from a range of ethnic groups are included

(7) Psychosocial aspects of breast cancer

The full text article is at http://breast-cancer-research.com/content/10/2/R26

(III) The CBCRP Priorities: Identifying Gaps in Breast Cancer Research Addressing Disparities and the Roles of the Physical and Social Environment – April 2008

For the last four years, the California Breast Cancer Research Program (CBCRP), the largest state-funded breast cancer research program in the United States, has convened over 300 leading experts and advocates from throughout California and across the nation, as a first step in a five-year effort to find answers that will push breast cancer research forward. The goals of the CBCRP in identifying new research areas and developing new initiatives are:

•Toinitiateresearchthatwillpointtoactionsthatcanbetakentoreducetheburdenofbreastcancer •Toconductresearchthatwillproviderecommendationstoadvocacyorganizationsandpolicymakersforevidence- based change •Tostimulatemoreresearchintotheenvironment-breastcancerconnectionandthereasonswhysomegroupsofwomenbeara greater burden of breast cancer

Environment is defined in this study as all of the non-genetic factors that might lead to breast cancer that are also largely outside an individual’s control.

The following areas/initiatives were identified and research funding was announced in April, 2008

#1 Environmental Links to Breast Cancer

Chemicals Policy and Breast Cancer California is pursuing the Green Chemistry Initiative to develop a new statewide policy on chemicals to assure that chemicals used and manufactured in the state are healthy for humans and sustainable for the environment. The CBCRP will bring breast cancer issues to the forefront in this process by funding an expert working group to consider the biological pathways through which chemicals contribute to breast cancer and identify the best currently available chemical safety tests. Estimated $200,000

Make Chemicals Testing Relevant to Breast CancerWith advances in our understanding of breast cancer and technology, there are new tests that could give a faster, more accurate or cost-effective determination of the role of individual chemicals in breast cancer. Researchers are invited to submit proposals to develop and evaluate the most comprehensive battery of accurate, reliable, rapid, and cost-effective existing tests that can be performed on chemicals to see if they cause changes in the body that can contribute to breast cancer. Estimated $5,000,000


Environmental Causes of Breast Cancer Across GenerationsResearchers funded under this initiative will test whether exposure to certain chemicals during the course of a woman’s pregnancy may increase the risk of breast cancer for the child later in life. The researchers will carry out long-term follow-up to discover more about how chemical exposures at various stages of life contribute to a woman developing breast cancer using pre-existing samples that were col-lected 40 years ago. Estimated $5,000,000

#2 Ethnic, Racial and Other Disparities in Breast Cancer Incidence and Survival

An Integrated Approach to Understanding Behavioral, Social, and Physical Environment Factors and Breast Cancer Among ImmigrantsIn general, women come to the U.S. from countries with lower rates of breast cancer than the U.S. rate. The longer they live here, the more their risk rises. Their daughters who are born here are at still higher risk. Researchers will be invited to submit proposals for trans-disciplin-ary pilot studies to describe the changes in behavior, social and physical environment that may cause the dramatic increase in breast cancer risk that occurs as people immigrate to and remain in California. Estimated $1,680,000

Demographic Questions for California Breast Cancer ResearchMeasures of population characteristics in health research are rarely standardized. Demographic questions are both necessary and useful to conceptualize and understand population group differences in health status, access to health care and survival/mortality. Researchers will be invited to submit their qualifications for convening an expert panel to identify the demographic measures that will best allow better predictions of health behaviors and outcomes among diverse populations. Estimated $400,000

Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival When breast tumors are diagnosed, they are often classified by stage. In general, the lower the stage of a tumor when a woman is diag-nosed, the more likely she is to survive. However, women from some racial and ethnic groups are less likely to survive than women from other racial and ethnic groups diagnosed at the same stage. The CBCRP is funding a $300,000 feasibility study to determine whether the data from existing California studies can be combined in order to provide a more complete, birds-eye picture of why people from differ-ent racial and ethnic groups, who are with diagnosed with breast cancer at the same stage, have different survival outcomes. If it proves feasible to combine the studies and answer meaningful research questions, the CBCRP will provide $3.9 million for such a study.

#3 Intersections of Multiple Factors That Impact Breast Cancer

New Statistical Models to Address Disease Complexity Environmental exposures—such as exposure to toxic chemicals or to radiation—can contribute to breast cancer. So can social exposures, such as living with the stress of racism or in a neighborhood where it is unsafe to go outside and exercise. Researchers will be invited to submit proposals to develop new statistical analysis strategies, using existing statistical methods, to better address how multiple environ-mental and social exposures across a woman’s full life course may interact to affect her breast cancer risk. They will test their models on breast cancer data, which may lead to new ideas on breast cancer causation. Estimated $1,100,000

Biological/Ecological Models of Breast Cancer Causation and Prevention Experts will be invited to submit their qualifications for convening a diverse, interdisciplinary panel that includes social scientists, environ-mental scientists, and experts on disparities. This interdisciplinary project will develop a complexity-theory based model of breast cancer causation that takes into account many events over time on many levels. The resulting model will move breast cancer research away from a focus on a limited number of possible causes of breast cancer considered in isolation from each other to considering a web of relationships among many variables that contribute to causing or preventing breast cancer over the life course. Estimated $320,000

Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women The most promising of two pilot studies will be considered for full study funding to explore environmental exposures and breast cancer among a large, diverse cohort of women. The statewide California Teachers Study has several universities collaborating on a study inves-tigating over 133,000 women who periodically provide information about their lives and biological samples (such as blood) to the study’s researchers.KaiserPermanenteNorthernCaliforniahasinitiatedastudywithover200,000womennamedtheResearchProgramonGenes,Environment and Health (RPGEH) examining genetics, lifestyle factors, environmental exposures and health status. Two pilot projects will be funded at $100,000 each. Funding for a full study would be $5-6 million

For additional information, see http://www.cabreastcancer.org/media/pr/041008.php


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(IV) The US Collaborative Summit on Breast Cancer Research – Nov 2007: Leesburg, Virginia –

The purpose of the Breast Cancer Summit was to define new research funding paradigms that would optimize opportunities and reduce barriers and waste toward the goal of ending breast cancer. The 100 invited participants included funders, advocates, govt agencies and scientists from academic institutions and the pharma industry.

Methodology:

The approach included a few didactic lectures, followed by a panel of experts and a Q&A session to help set the stage so that all partici-pants were informed about the current landscape and opportunities. Then, participants were divided into small group round tables where barrierstoprogressandkeyissueswerediscussed.Overnight,theorganizingmembers(Avon,ACS,Komen,NCI,etc)metandlookedoverall the roundtable discussions. On the second day, in plenary, the outcomes of the roundtables were discussed and three priorities agreed.

Results:

The following action items were developed by consensus:1. A National Breast Cancer Planning Committee was formed by key funding agencies, including the Avon Foundation, The Breast CancerResearchFoundation,SusanGKomenfortheCureandothers–tomeetperiodicallytoreviewthebreastcancerresearch landscape and national agenda in breast cancer2. Information on grant awards is to be placed into common database by the key funding agencies to help identify gaps, opportunities and overlaps. 3. A report to the public will be developed by key funding agencies on how donations are expended in the breast cancer field. The public will be able to go online and search where the funds are going and understand how the non-profit organizations are working together.


Mapping The Future

CSO Category (1) and corresponding Cancer ControlContinuum categories (2) CSO Code (3)

Top 10 ResearchPriorities - March 2007

Initiatives identified by the CBCRP - April 2008

Future research recommendations from UK gap analysis - March 2008

International Research Priorities, Identified Gaps and Barriers

p 88


CSO Code³


1. Biology


1.1 Normal Functioning1.2 Cancer Initiation: Alterations in Chromosomes1.3 Cancer Initiation: Oncogenes and Tumor Suppressor Genes1.4 Cancer progression and metastasis1.5 Resources and Infrastructure

1.3 Stem cells (#4 -Determine the role of stem cells in breast cancer devel-opment, progression and treatment sensitivity)

1.3 Pathways (#8 - Determine if other growth factor pathways are important targets for therapy such as EGFR, IGFR, Notch, Hedeghog, Wnt and other angiogenic pathways)

1.3 Endocrine resistance (#10 - Identify drugable targets that can be devel-oped/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance )

1.4 DCIS to progression (#3 - Deter-mine the factors in DCIS and/or ADH leading to progression into invasive carcinoma)

1.4 Gene mutations responsible for metastasis (#9 - Investigate which gene mutations in a cancer lead to metastases)

1.5 Computer system (#6 - Develop a system (computer etc) that will integrate all the information so far gathered about breast cancer to build robust models for understanding the aetiopathogenesis, treatment and prognosis of breast cancer)

1.5 Access to appropriate and anno-tated clinical material (Generic needs)

1.2/1.5 Encourage development of re-search techniques to allow integrated analysis of sequence-level, epigenetic and large-scale somatic changes ( theme #1 Genetics of breast cancer)

1.2/1.5 Engage in national initiatives for activities such as high-throughput re-sequencing and UK controls (theme #1 Genetics of breast cancer)

1.2/1.5 Encourage research involving intermediate phenotypes (theme #1 Genetics of breast cancer)

1.2/1.3/1.4 Gain a greater understand-ing of the genetic changes that occur within atypias and DCIS (theme #2 Initiation of breast cancer)

1.5 Enhance access to appropriate clinical materials, including sequential samples obtained during treatments extending to new agents (theme #3 Progression of breast cancer)

1.4 Consider genetic signature when exploring progression biology and designing clinical trials (theme # 3 Progression of breast cancer)

1.5 Build resources through the high-quality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), includ-ing samples of primary tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer)


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CSO Code³


2. Etiology


2.1 Exogenous Factors in the Origin and Cause of Cancer2.2 Endogenous Factors in the Origin and Cause of Cancer2.3 Interactions of genes and/or genetic polymorphisms with exogenous and/or endogenous factors2.4 Resources and Infrastructure related to etiology

2.4 Computer system (#6 - Develop a system (computer etc) that will integrate all the information so far gathered about breast cancer to build robust models for understanding the aetiopathogenesis, treatment and prognosis of breast cancer)

1.4 Develop methods for easy, repro-ducible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer)

1.4 Increase research efforts into the role of the tumour microenvironment and the immune system in the develop-ment and treatment of breast cancer (theme #4 Therapies and targets in breast cancer)

2.4 Access to appropriate and anno-tated clinical material (Generic needs #2)

2.4 Cross disciplinary working (Generic needs #3)

2.3/2.4 Encourage development of re-search techniques to allow integrated analysis of sequence-level, epige-netic and large-scale somatic changes (theme #1 Genetics of breast cancer)

2.3/2.4 Engage in national initiatives for activities such as high-throughput re-sequencing and UK controls (theme #1 Genetics of breast cancer)

2.3/2.4 Encourage research involving intermediate phenotypes (theme #1 Genetics of breast cancer)


2.1/2.2/2.3/2.4 Environmental links to breast cancer*Chemicals Policy and Breast Cancer* Make Chemicals Testing Relevant to Breast Cancer*Environmental Causes of Breast Cancer Across Generations

2.1/2.2/2.3/2.4 Ethnic, racial and other disparities in breast cancer incidence and survival*An Integrated Approach to Under-standing, Behavioral, Social and Physical Environment Factors and Breast Cancer Among Immigrants*Demographic Questions for California Breast Cancer Research*Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival

2.4 Intersections of multiple factors that impact breast cancer *New Statistical Models to Address Disease Complexity


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CSO Code³


3. Prevention


3.1 Interventions to prevent cancer: personal behaviours that affect cancer risk3.2 Nutritional science in cancer prevention3.3 Chemoprevention3.4 Vaccines3.5 Complementary and Alternative Prevention Approaches3.6 Resources and Infrastructure related to prevention

2.4 Build resources through the high-quality, uniform, multicentre collection of clinical material from breast cancer patients before and during treatment (including neoadjuvant studies), includ-ing samples of primary tumours as well as metastatic deposits (theme #4 Therapies and targets in breast cancer





3.1/3.6 Improve risk prevention models (theme #6 Prevention of breast cancer)

3.6 Encourage transdisciplinary input to prevention trials (for example, geneticists, epidemiologists, nutrition-ists, psychologists and clinicians) to study the psychosocial, compliance and genetic aspects of prevention (theme #6 Prevention of breast cancer)

*Biological/Ecological Models of Breast Cancer Causation and Prevention*Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women

3.1-3.6 Environmental links to breast cancer*Chemicals Policy and Breast Cancer* Make Chemicals Testing Relevant to Breast Cancer*Environmental Causes of Breast Cancer Across Generations

3.1-3.6 Ethnic, racial and other dis-parities in breast cancer incidence and survival*An Integrated Approach to Under-standing, Behavioral, Social and Physi-cal Environment Factors and Breast Cancer Among Immigrants*Demographic Questions for California Breast Cancer Research*Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival

3.1-3.6 Intersections of multiple factors that impact breast cancer*New Statistical Models to Address Disease Complexity*Biological/Ecological Models of Breast Cancer Causation and Preven-tion*Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women


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CSO Code³




4.1 Technology development and/or marker discovery4.2 Technology and/or marker evaluation with respect to fundamental parameters of method4.3 Technology and/or marker testing in a clinical setting4.4 Resources and infrastructure related to detection, diagnosis or prognosis

4.1/4.1 Molecular signatures (#1 - Identification of molecular signatures to select patients who could be spared chemotherapy )

4.1/4.2/4.3 Optimal chemotherapy (#2 - Identify molecular features which indicate the optimal chemotherapy regimen)

3.1/3.6 Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer)



4.4 Encourage development of research techniques to allow integrated analysis of sequence-level, epigenetic and large-scale somatic changes (theme #1 Genetics of breast cancer)

4.4 Engage in national initiatives for activities such as high-throughput re-sequencing and UK controls (theme #1 Genetics of breast cancer)

4.4 Encourage research involving intermediate phenotypes (theme #1 Genetics of breast cancer)

4.1 Improve preclinical models, research reagents and technologies (including imaging) (theme #3 Progres-sion of breast cancer)




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CSO Code³


4. Early detection, diagnosis and prognosis (cont.)



4.1/4.2/4.3/4.4 Design innovative trials and translational studies to develop and evaluate predictive and prognostic markers (theme #5 Disease markers in breast cancer)

4.1/4.2/4.3/4.4 Develop close multidis-ciplinary collaboration with high-quality histopathology and rigorous scientific assessments to validate new markers important for patient outcome (theme #5 Disease markers in breast cancer)

4.1/4.2/4.3/4.4 Identify robust markers of resistance or sensitivity to therapy that can be applied across the spec-trum of breast disease from screen-detected to metastatic breast cancer (theme #5 Disease markers in breast cancer)


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CSO Code³


5. Treatment

*Treatment

5.1 Localized therapies: discovery and development5.2 Localized therapies: clinical applications5.3 Systemic therapies: discovery and development5.4 Systemic therapies: clinical applications5.5 Combinations of localized and systemic therapies5.6 Complementary and alternative treatment approaches5.7 Resources and infrastructure related to treatment

5.1/5.3 Triple negative BC (#5 - Identify response/resistance mechanisms and thereby therapeutic targets for triple negative breast cancer)

5.1 No adjuvant therapy (#7 - Identify-ing which low risk patients require NO adjuvant therapy)

5.3 Endocrine resistance (#10 - Identify drugable targets that can be devel-oped/ exploited for therapeutic gain to overcome primary/secondary endocrine resistance)






5.2/5.4/5.5 Develop methods for easy, reproducible monitoring of response to and development of resistance to therapy, as well as early disease progression (theme #4 Therapies and targets in breast cancer)

5.3 Increase research efforts into the role of the tumour microenvironment and the immune system in the develop-ment and treatment of breast cancer (theme #4 Therapies and targets in breast cancer)


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CSO Code³


5. Treatment

*Treatment (cont.)



6.1 Patient care and survivorship issues6.2 Surveillance6.3 Behavior6.4 Cost analyses and health care delivery6.5 Education and communication6.6 End-of-life care6.7 Ethics and confidentiality in cancer research6.8 Complementary and alternative approaches for supportive care of patients and survivors6.9 Resources and infrastructure related to cancer control, survivorship and outcomes research

5.3/5.4 Identify robust markers of resistance or sensitivity to therapy that can be applied across the spectrum of breast disease from screen-detected to metastatic breast cancer (theme #5 Disease markers in breast cancer)

5.1 Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer)


6.2 Establish the potential benefits of diet and exercise post-diagnosis on outcome and quality of life for breast cancer patients (theme #6 Prevention of breast cancer)

6.1/6.3/6.5/6.9 Develop and rigorously evaluate appropriate psychosocial interventions (theme #7 Psychosocial aspects of breast cancer)

6.1/6.5/6.9 Encourage cross-specialty collaborations to incorporate psychosocial issues and psychological theory (for example psychological theories in relation to behaviour change are relevant to those researching preventative lifestyles including diet and exercise) (theme #7 Psychosocial aspects of breast cancer)

6.2-6.9 Environmental links to breast cancer*Chemicals Policy and Breast Cancer* Make Chemicals Testing Relevant to Breast Cancer*Environmental Causes of Breast Cancer Across Generations

6.2-6.9 Ethnic, racial and other dis-parities in breast cancer incidence and survival*An Integrated Approach to Under-standing, Behavioral, Social and Physical Environment Factors and Breast Cancer Among Immigrants*Demographic Questions for California Breast Cancer Research*Understanding Racial and Ethnic Differences in Stage-Specific Breast Cancer Survival


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CSO Code³



*Supportive care*Palliative care (cont.)



7.1 Development and characterization of model system7.2 Applications of model systems7.3 Resources and infrastructure related to scientific model systems

6.1/6.2/6.4/6.5/6.9 Ensure research gives greater attention to all stages of breast cancer and that the needs of older women and those from a range of ethnic groups are included (theme #7 Psychosocial aspects of breast cancer)

7.1/7.2 Improve preclinical models (Generic needs #1)

7.3 Cross-disciplinary working (Generic needs #3)

7.1/7.2 Develop three-dimensional cell culture models, containing multiple cell types, which reflects the tissue ar-chitecture of the normal and diseased breast (theme #2 Initiation of breast cancer)

7.1/7.2 Generate better animal models, particularly for ER-positive tumours, in which gene expression can be ma-nipulated in all cell types of the mam-mary gland and will not be altered by transdifferentiation or dedifferentiation (theme #2 Initiation of breast cancer)

6.2-6.9 Intersections of multiple factors that impact breast cancer*New Statistical Models to Address Disease Complexity*Biological/Ecological Models of Breast Cancer Causation and Prevention*Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women

(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)(2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.(3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details

National Breast Cancer Research Summit | Other

Mapping The Future

A Listing of Relevant Acronyms and Definitions

ACB

AHFMR

BCCA

CAPCA

CBCF

Cancer Control Continuum

CCMB

CCRA

CCS

CIHR

CPAC

CRS

CSO Code

CSCC

Collaboration

Alberta Cancer Board

Alberta Heritage Foundation for Medical Research

British Columbia Cancer Agency

Canadian Association of Provincial Cancer Agencies

Canadian Breast Cancer Foundation

The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.

CancerCare Manitoba

The Canadian Cancer Research Alliance is an alliance of cancer research funding organizations and affiliated partners working together to enhance the overall state of cancer research funding in Canada through improved communication, cooperation and coordination.

CCRA started within the context of the Canadian Strategy for Cancer Control (CSCC), which repre-sents a very broad partnership of Canada’s leading cancer organizations that has worked since the late 1990s to create an inclusive, integrated and comprehensive strategy to address the increasing number of new cancer cases and cancer deaths in Canada.

Canadian Cancer Society

Canadian Institutes of Health Research

The Canadian Partnership Against Cancer is a relatively new independent corporation charged with accelerating action on cancer control across Canada.

The foundation document for CPAC is the Canadian Strategy for Cancer Control, which was developed over the course of seven years with a number of stakeholder groups.

Cancer Research Society

The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)

The Canadian Strategy for Cancer Control is a stakeholder-driven initiative, led by a partnership between the Canadian Cancer Society, National Cancer Institute of Canada, Canadian Association of Provincial Cancer Agencies and Health Canada.

“a process through which parties who see different aspects of a problem can explore constructively their differences and search for solutions that go beyond their own limited vision of what is pos-sible” (Gray, 1989: 5). There are different types of collaboration. A small body of literature does exist that has segmented the term “collaboration” into a number of different models such as Coexistence, Cooperation, Coordination, Coalition and Coadunation based on factors such as level of autonomy and integration, locus of decision making, and resources deployment (Bailey and Koney, 2000; Frey, Lohmeier, et al., 2004; Gajda, 2004; Hogue, 1991; Peterson, 1991)


CTCRI

Elements of a Research Strategy

FCSQ

FRSQ

Knowledge Translation

MSFHR

NCIC

OICR

Partnership

PHAC

Research System

SCA

SRAW

TFF

Translational research

Canadian Tobacco Control Research Initiative

The content that must be included in a national breast cancer research framework for it to be credible. Examples might include: description of methodology; identification of enabling structure; having both national and local/regional priorities; having a balanced portfolio

Fondation du cancer du sein du Québec

Fonds de la recherche en santé du Québec

The exchange, synthesis and ethically-sound application of knowledge – within a complex system of interactions among researchers and users - to accelerate the capture of the benefits of research for Canadians through improved health, more effective services and products, and a strengthened health care system

Michael Smith Foundation for Health Research

National Cancer Institute of Canada

Ontario Institute for Cancer Research

A partnership is an arrangement in which the parties in a spirit of co-operation agree to carry on an enterprise, contribute to it, by combining property, knowledge or activities and to share its profit. There may or may not be a formal agreement. Thus, a partnership is a specific type of collaboration that describes an ongoing relationship where the entities are vested in each others’ success

Public Health Agency of Canada

The funding mechanisms, infrastructure requirements, key processes (such as planning and surveillance) and human resources to support a world class research enterprise

Saskatchewan Cancer Agency

Strategic Research Agenda Workshop held by CBCRA in December 2006.

Terry Fox Foundation

For the purposes of the Top 10 Priorities report, translational research is defined as endeavours to apply the results of laboratory studies to advance the treatment of breast cancer


Mapping The Future

Definitions of terms used in survey of breast cancer survivors, family members/loved ones and others involved in breast cancer (survey instrument of main categories of breast cancer research)

Risk factors and how to prevent breast cancer

Screening for breast cancer (early detection)

Breast cancer treatment

Caring support and quality of life

Health systems and health services

Lab research (also called basic research)

This kind of research would study the risk factors that make people more likely to get breast cancer. It would include lab and population studies into risks such as smoking, toxic chemicals, air and water pollution, and the use of common medicines such as hor-mones and anti-depressants. Research in this topic would also look at how family history, breast density, food, vitamins, and exercise may be linked to the risk of breast cancer.

The kinds of screening tests we now use include mammography, digital and magnetic resonance imaging (MRI). These tests make it possible to find cancer early. Research on this broad topic would focus on finding better and more advanced ways to do breast cancer screening.

Research on this topic would look at ways to improve breast cancer treatment that are now in common use across Canada. New drug-based ways to treat cancer, such as vaccines and drugs that target certain cells within the breast, would be explored. Complementary and alternative medicine would also be studied.

When a woman learns she has breast cancer, this may have a deep effect on how she feels about her life. Research in this topic includes the benefits of support groups and group therapy. Studies would also look at how breast cancer affects a woman’s social relationships and how certain groups of women (based on their age, ethnic group, etc.) cope with the disease. How women make decisions about treatment and how they use “decision aids” (e.g. brochures) would be studied. A final part of this topic includes research into ways to help women with breast cancer learn to reduce stress.

Research on this topic has a strong community focus. Some studies might evaluate breast cancer screening programs. Studies might also focus on women’s access to: health services, support services, end-of-life care, ongoing help, and health services outside the mainstream. An important part of this type of research is understanding how research findings translate into medical practice.

Studies that fall under this topic include laboratory research on hormonal factors; the role of tumour suppressor genes and cancer-causing genes; how breast cancer develops over time; cell markers; how cancer spreads; and family history factors. New technologies are used in many of these lab studies.

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