1

BIOGRAPHICALSKETCH

NAME:Terry,SharonFontaineeRACOMMONSUSERNAME(credential,e.g.,agencylogin):sharonfterrygaPOSITIONTITLE:President&CEO,GeneticAlliance

EDUCATION/TRAINING*INSTITUTIONANDLOCATION DEGREE Completion FIELDOFSTUDY

StateUniversityofNewYork,StonyBrook B.A. 05/1975 EarthSciencesAssumptionCollege M.A. 05/1983 ReligiousStudiesA. PersonalStatementIama‘citizen’orlayscientist.Whenmychildrenwerediagnosedin1994withararegeneticconditionIbecameanunexpectedactivist,communityorganizer,advocate,andresearcher.Ifoundedanadvocacyorganizationin1995,createdthefirstlayrunregistryandbiobank,andafterafewyearsofwetbenchwork,discoveredthegeneforthecondition.Iorganizedboththeaffectedindividualsandtheresearchersintoproductivecommunities.Notingthetremendousneedandlackofsystematicsolutions,Imovedtoaleadershippositioninacoalitionofhealthadvocacyorganizations-GeneticAlliance.Inmy13yearsinthisorganization,Ihavecreatedmorethan200toolsthatareleveragedbyotherlayleaderstotransformbiomedicalresearch.In2003,IfoundedGeneticAllianceRegistryandBioBank,asharedinfrastructureforanycondition,allowingcross-conditionandco-morbiditystudies.MorerecentlyIhavepartneredwithaprivacystartuptocreateapublic-privatepartnershipallowingindividualstodeterminehow,withwhom,andwhentosharetheirhealthinformation.ThisdynamicandgranularpreferenceplatformiscalledPlatformforEngagingEveryoneResponsiblyandisnowpartofthePatientPoweredResearchNetworkofthePatientCenteredOutcomesResearchInstitute,andhasbeendeployedacross30communities.Theseincludediseasespecificorganizations,andothercommunitieswithaffinitiesaroundlifecourseorcauses.Inaddition,Isuccessfullyadministeredmorethan$30Mincompetitivelywongrants(e.g.staffing,researchprotections,budget),collaboratedwithresearchers,patientsandfamilies,andpublishedmorethan130peer-reviewedpublications.Iamexcellentatrepresentingtheconsumer/patient/participantvoice,andalsoworkingwithinthetraditionalresearchenterprise.Iamateamplayer,andsystemslevelstrategist,andvisionaryworkingtoalleviatesufferingandincreasehealth.Myearlycontributionstosciencepurposefullymimickedatraditionalpath,thoughIlackedanyformalsciencetrainingorfunding.Iwantedtoaccelerateresearchonpseudoxanthomaelasticum(PXE)anddeterminedthatIhadtoearnscientificcredibility.Borrowinglabbenchspaceatnight,togetherwithmyhusband,Idiscoveredthegene(ABCC6)associatedwithpseudoxanthomaelasticum(PXE)andpatentedittobesureitwouldbeopenlylicensed.Creative,long-tail,engagementmethodsenabledtheaggregationofhealthinformationfrom4000individualsaffectedbyPXE(PXEaffects1/100,000people).Analyzingthisinformationledtoawell-characterizedcohort,hypothesesaboutbiomarkers,thediscoverythattheconditionwasametaboliccondition,andarobustnaturalhistoryofthecondition.Subsequentdiscoveriesfocusedonparticipant-centeredoutcomesthatledtoimprovementsinstandardofcare.TheseincluderecognizingthatmineralizationinbreasttissueisatypicalPXEmanifestation,andbiopsyisnotneeded,advisingthatplacentalcalcificationispartofPXEanditdoesn’taffectthefetusorthemother,andadvisingthatmenwithPXEandtesticularmicrolithiasisdonothavetobemonitoredfortesticularcancer.Mostrecentlywehavelaunchedarandomizedclinicaltrialthatwillendthismonthaftertwoyears.Finally,justthissummerwediscovereda

2

potentialpathwayactiveinPXE.Icontinuetodopseudoxanthomaelasticum(PXE)research,andmanagethe30laboratoryresearchconsortium.Inadditiontothesystemsandcultureworkdescribedabove,Istudytheinterestofindividualsinparticipatingintheirownsolutionstothehealthcarechallengestheyface.Thisissometimescalledcitizenscience,orparticipatoryscience.Afteryearsofliteraturereviews,primaryresearch,andexperientiallearnings,itbecameclearthatthepublicwouldbebetterservedwithgranularanddynamicconsentingsystems.PlatformforEngagingEveryoneResponsiblywascreatedandhasservedmorethan30organizations.Thisyearwearestudyingboththeplatformandtheexperienceofthoseusingit.PEERwashonoredasoneoffivetechnologysolutionsforengagingindividuals,andwasalsoreferencedinthePMIWorkingGroupReport.Iworktotransformbiomedicalresearchintosomethingthatordinarypeoplecareaboutandinwhichtheywanttoparticipate.Iamakeyleaderinmanynationalandinternationaleffortstostudyengagement,informedconsent,familyinvolvementinhealthdatasharing,datasharingoverall,incidentialfindings,andreturnofresults.Animatingthepublictoparticipateinresearchrequiresthatopportunitiesareinthepathwayofordinarypeople,andthattheseopportunitiesare“frictionless.”Inaddition,thepublicmustbemadeawareoftherelevanceofbiomedicalresearchtothetreatmentsandpreventativemeasurestheyseek.Thepublicmustparticipateinallaspectsofbiomedicalresearch,fromaskingtheresearchquestions,designingtheprotocol,participatingintheconductofthestudy,analyizingdata,anddissminatingresultstotheircommunities.Thisshoundbeaccessibleandnotburdensome.Systemstorealizethisgoalmustbecreatedtoacceleratethisnewculture.B. PositionsandHonorsHonors2005 HonoraryDoctorateforcommunityengagement,IonaCollege2007 1stAnnualPatientServiceAward,UNCInstituteforPharmacogenomicsandIndividualizedTherapy2009 ElectedAshokaFellow2010 Research!America’s2011PaulG.RogersDistinguishedOrganizationAdvocacyAward2011 ClinicalResearchForum’sPublicAdvocacyAward2012 SpiritofEmpowermentAdvocacyAward,FacingOurRiskofCancerEmpowered2012 HonoraryProfessorship,HebeiUnitedUniversity,Tangshan,China2012 Collaborate|ActivateInnovationChallengeFirstPrizeAward2013 AshokaChangemakersFirstPrize2013 ForbesBestBusinessModelforTransformingHealthSystemsAcademicAppointments1986-1988 CampusMinister,Instructor,AssumptionCollege,Worcester,MAMemberships-ProfessionalOrganizationsMember,AmericanAssociationfortheAdvancementofScienceMember,AmericanCollegeofMedicalGeneticsMember,AmericanSocietyofHumanGeneticsMember,AssociationforResearchinVisionandOphthalmologyMember,CoalitionofSkinDiseasesMember,SocietyofInvestigativeDermatologyCharterMember,AmericanSocietyofMatrixBiology

3

PositionsHeld-Organizations1995-present FoundingCEO,PXEInternational,Inc.1998-2001 VicePresidentforConsumers,GeneticAlliance1999-present President,CoalitionofHeritableDisordersofConnectiveTissue2000-2010 ProfessionalAdvisoryBoardMember,AneurysmOutreachInc.2001-present Member,ProfessionalAdvisoryBoard,AutosomalRecessivePolycysticKidneyDiseaseAlliance2002-2005 BoardMember,AmericanSocietyofMatrixBiology2002-2010 BoardMember,TheBiotechnologyInstitute2002-present Member,ScientificCouncil,PXEFrance2002-present President,GeneticAlliance2003-2006 Member,NationalInstituteofArthritisMusculoskeletalandSkinDiseasesCouncil,NIH,DHHS2003-present FoundingPresident,GeneticAllianceRegistryandBioBankBoardofDirectors2004-2009 BoardMember,DNADirect2004-2010 Member,GeneticServicesResearchAdvisoryBoard2004-present BoardMember,InternationalGeneticAlliance2004-present CEO,GeneticAlliance2005-2007 BoardMember,PersonalizedMedicineCoalition2005-2009 BoardMember,ColorectalCancerCoalition2006-present BoardMember,Coalitionfor21stCenturyMedicine2007-2013 BoardMember,NationalCoalitionofHealthProfessionalEducationinGenetics2008-2011 BoardMember,CenterforInformation&StudyonClinicalResearchParticipation(CISCRP)2011-present Member,InstituteofMedicineBoardonHealthSciencesPolicy2013-present President,EspeRareFoundation,Geneva,Switzerland2016-present BoardMember,InterfaceHealthSociety,CanadaPositionsHeld-Committees1997-2002 Consumerrepresentative,Women’sDermatologyCommittee,AmericanAcademyof

Dermatology1997-2002 RepresentativetotheResearchCouncil,AmericanAcademyofDermatology1997-2002 Member,Ad-hocCommitteeforConsumerIssues,TheAmericanSocietyofHumanGenetics2000-2003 AppointedMember,AdHocCommitteeofExpertsonIRBsandInformedConsent,HHS

Secretary'sAdvisoryCouncilonGeneticTesting2000-2004 AppointedMember,Ethical,LegalandSocialIssuesResearchAdvisors,NIH2000-2004 Member,AdvisoryCommitteeonInformedConsent,CentersforDiseaseControl2002-2006 AppointedMember,AdvisoryBoard,GeneticsandPublicPolicyCenter,JohnsHopkins

University2003-2006 AppointedMember,TheSocietyofInvestigativeDermatologyGovernmentLiaisonCommittee2004-2008 AdvisoryBoardMember,CenterforInformation&StudyonClinicalResearchParticipation2004-2010 Member,OfficeofRareDiseases,NIHandCDCRareDiseasesTestingWorkingGroup2005-2009 Member,Cellular,Tissue,andGeneTherapiesAdvisoryCommittee,FDA2005-2013 Liaison,NationalAdvisoryCouncilforHumanGenomeResearch2006-2008 WorkgroupMember,GeneticTestingforRareDiseasesinanInternationalPerspective2006-present Expertadvisor,Cellular,Tissue,andGeneTherapiesAdvisoryCommittee,FDA2007-2009 Chairperson,SocialIssuesCommittee,AmericanSocietyofHumanGenetics2007-2011 Member,GoogleHealthAdvisoryBoard2007-2012 Liaison,AdvisoryCommitteeonHeritableDisordersinNewbornandChildren2007-2012 Member,InstituteofMedicineRoundtableonTranslatingGenomic-BasedResearchforHealth

4

2008-2009 Member,InstituteofMedicinePlanningCommittee,WorkshopontheSystemsEvaluationofGenome-BasedHealthCare

2009-2011 Member,AdvocatesinResearchTrainingPlanningTeam,NationalCancerInstitute,NIH2009-2015 Member,HealthandHumanServicesOfficeoftheNationalCoordinatorHealthInformation

TechnologyStandardsCommittee2009-present Member,RosalindFranklinSocietyAdvisoryBoard2010 Member,InstituteofMedicinePlanningCommittee,WorkshoponEvidenceGenerationfor

GenomicDiagnosticTestDevelopment2010 Member,InstituteofMedicinePlanningCommittee,Workshop:EstablishingPrecompetitive

CollaborationstoStimulateGenomicsDrivenDrugDevelopment2010-present ExecutiveCommitteemember,InternationalRareDiseaseResearchConsortium2011 Member,InstituteofMedicineCommitteeontheUseofChimpanzeesinBiomedicaland

BehavioralResearch2011-2012 Member,InstituteofMedicineCommitteeReviewoftheCaliforniaInstituteofRegenerative

Medicine(CIRM)2011-2012 Member,InstituteofMedicinePlanningCommittee,WorkshoponNewParadigmsinDrug

Discovery:HowGenomicDataAreBeingUsedtoRevolutionizetheDrugDiscoveryandDevelopmentProcess

2012 Chair,InstituteofMedicineWorkshoponSharingClinicalResearchData2012-2013 Co-chair,InstituteofMedicinePlanningCommittee,WorkshoponImprovingtheEfficiencyand

EffectivenessofGenomicScienceTranslation2012-2013 Vice-chair,InstituteofMedicineCommitteeReviewoftheClinicalandTranslationalScience

AwardsProgramattheNationalCenterforAdvancingTranslationalSciences(NCATS)2012-present Co-chair,InstituteofMedicineRoundtableonTranslatingGenomic-BasedResearchforHealth2013 Chair,InstituteofMedicineWorkshop,AssuringIntegritywhileFacilitatingInnovationin

MedicalResearch2013 Member,RegulatoryExpertWorkingGroupoftheGlobalAlliance2013 Member,ScientificAdvisoryBoard,FondazioneTelethon2013 Member,InstituteofMedicinePlanningCommittee,WorkshoponGenomics-EnabledDrug

RepurposingandRepositioning2013-2014 Member,InstituteofMedicineIndependentReviewandAssessmentoftheActivitiesoftheNIH

RecombinantDNAAdvisoryCommittee2013-2014 Member,InstituteofMedicinePlanningCommittee,WorkshoponDataHarmonizationfor

Patient-CenteredClinicalResearch2013-2015 Member,InstituteofMedicineCommitteeonStrategiesforResponsibleSharingofClinicalTrial

Data2013-present Scientificadvisor,BabySeq,GenomeSequence-BasedScreeningforChildhoodRiskand

NewbornIllness2013-present SteeringCommitteemember,PhenX:ConsensusMeasuresforPhenotypesandeXposures2014-present Member,PubMedCentralAdvisoryCommittee,NationalInstitutesofHealth2014 Member,InstituteofMedicinePlanningCommittee,WorkshoponEthicalReviewandOversight

IssuesinResearchInvolvingStandardofCareInterventions2014-present Scientificadvisor,MEDSeq,IntegrationofWholeGenomeSequencingintoClinicalMedicine2014-present ExecutiveCommitteemember,Councilmember,andEngagementCommitteeChair,PCORnet,

Patient-CenteredOutcomesResearchInstitute2014-present ExecutiveCommitteemember,AcceleratingMedicinesPartnership

5

2015-present Member,InstituteofMedicineCommitteeonPublicHealthApproachestoReduceVisionImpairmentandPromoteEyeHealth

2015-present Member,NationalAcademyofSciences,Engineering,andMedicineCommitteeonHumanGeneEditing:Scientific,Medical,andEthicalConsiderations

2015-present BoardMember,StrategicAdvisoryBoardfortheGlobalAllianceforGenomesandHealth2015-present PrecisionMedicineInitiativeCohortProgramAdvisoryPanel2016-present ActingChair,PubMedCentralAdvisoryCommittee,NationalInstitutesofHealth2016-present Chair,PCORnetEngagementCommittee2016-present Member,BlueRibbonPanel’sWorkingGrouponEnhancedDataSharing,CancerMoonshot,

WhiteHouse2016-present Member,CuresAccelerationNetworkReviewBoard,NationalCenterforAccelerating

TranslationScience,NIHPositionsHeld–EditorialBoards2011-present GeneticTestingandBiomarkers2013-present TheJournalofRareDisorders2013-present Genome2014-present DrugRepurposing,RescueandRepositioning2014-present RapidScience2016-present ChiefPatientAdvisor,ClinicalandTranslationalScience2016-present PatientEngagementEditor,GeneticTestingandBiomarkersC. SelectedPeer-ReviewedPublicationsandPresentationsJournalArticles1. UittoJ,BoydC,LebwohlM,MoshellA,RosenbloomJ,andTerrySF.Internationalcentennialmeetingon

pseudoxanthomaelasticum:progressinPXEresearch.JInvestDermatol.1998May;110(5):840-2.PMID:9579557

2. LeSauxO,UrbanZ,GöringHHH,CsiszarK,PopeFM,RichardsA,Pasquali-RonchettiI,TerrySF,BercovitchLG,LebwohlMG,BreuningMH,vandenBergP,KornetL,DoggettN,OttJ,deJongPTVM,BergenAAB,BoydCD.Pseudoxanthomaelasticummapstoan820kbregionofthep13.1regionofchromosome16.Genomics.1999Nov15;62(1):1-10.PMID:10585762

3. LeSauxO,UrbanZ,TschuchC,CsiszarK,BacchelliB,QuaglinoD,Pasquali-RonchettiI,PopeFM,RichardsA,TerrySF,BercovitchL,dePaepeA,BoydCD.MutationsinageneencodinganABCtransportercausepseudoxanthomaelasticum.NatGenet.2000Jun;25(2):223-7.PMID:10835642

4. BergenAA,PlompAS,SchuurmanEJ,TerrySF,BreuningM,DauwerseH,SwartJ,KoolM,vanSoestS,BaasF,tenBrinkJB,deJongPT.MutationsinABCC6causepseudoxanthomaelasticum.NatGenet.2000Jun;25(2):228-31.PMID:10835643

5. TerrySF,DavidsonME.MeetingtheNeedsofAffectedIndividualsintheNewGeneticsAge.ExceptionalParent,December2000.

6. TerrySF,DavidsonME.EmpoweringthePublictobeInformedConsumersofGeneticTechnologiesandServices.CommunityGenet.2000Dec;3(3):148-50.PMID:11831266

7. TerrySF,BercovitchL,BoydC(June2001)Pseudoxanthomaelasticum(PXE).In:GeneClinics:ClinicalGeneticInformationResource[databaseonline].Copyright,UniversityofWashington,Seattle.Availableathttp://www.geneclinics.org.PMID:20301292

6

8. GheduzziD,TaparelliF,QuaglinoDJr,DiRicoC,BercovitchL,TerrySF,SingerDB,Pasquali-RonchettiI.Theplacentainpseudoxanthomaelasticum:clinical,structuralandimmunochemicalstudy.Placenta.2001Jul;22(6):580-90.PMID:11440547

9. TerrySF,BoydC.ResearchingthebiologyofPXE:partneringintheprocess.AmJMedGenet.2001Fall;106(3):177-84.PMID:11778977

10. TerryPF,TerrySF.Aconsumerperspectiveoninformedconsentandthird-partyissues.JContinEducHealthProf.2001Fall;21(4):256-64.PMID:11803770

11. LeSauxO,BeckK,SachsingerC,SilvestriC,TreiberC,GöringHH,JohnsonEW,DePaepeA,PopeFM,Pasquali-RonchettiI,BercovitchL,MaraisAS,ViljoenDL,TerrySF,BoydCD.Aspectrumofabcc6mutationsisresponsibleforpseudoxanthomaelasticum.AmJHumGenet.2001Oct;69(4):749-64.PMID:11536079

12. BeskowLM,BurkeW,MerzJF,BarrPA,TerrySF,PenchaszadehVB,GostinLO,GwinnM,KhouryMJ.Informedconsentforpopulation-basedresearchinvolvinggenetics.JAMA.2001Nov14;286(18):2315-21.PMID:11710898

13. RothenbergKH,TerrySF.Humangenetics.Beforeit'stoolate--addressingfearofgeneticinformation.Science.2002Jul12;297(5579):196-7.PMID:12114610

14. TerrySF.Pharmacogeneticchallenges.HealthAff(Millwood).2002Sep-Oct;21(5):307;discussion307-8.PMID:12224905

15. LeSauxO,BeckK,SachsingerC,TreiberC,GöringHH,CurryK,JohnsonEW,BercovitchL,MaraisAS,TerrySF,ViljoenDL,BoydCD.EvidenceforafoundereffectforpseudoxanthomaelasticumintheAfrikanerpopulationofSouthAfrica.HumGenet.2002Oct;111(4-5):331-8.PMID:12384774

16. BercovitchL,ScheppsB,KoellikerS,MagroC,TerrySF,LebwohlM.Mammographicfindingsinpseudoxanthomaelasticum.JAmAcadDermatol.2003Mar;48(3):359-66.PMID:12637915

17. UhlmannWR,BennettR,BotkinJR,BotsteinD,BoughmanJA,ChakravartiA,ClaytonEW,KahnJ,KoenigB,MurrayTH,OlsonMV,RowleyJ,TerrySF,ValleD.Planningthegenomeinstitute'sfuture.Science.2003Mar7;299(5612):1515;authorreply1515.PMID:12624247

18. CollinsFS,GreenED,GuttmacherAE,GuyerMS,etal;USNationalHumanGenomeResearchInstitute.Avisionforthefutureofgenomicsresearch.Nature.2003Apr24;422(6934):835-47.PMID:12695777

19. LinAE,TerrySF,LernerB,AndersonR,IronsM.Participationbyclinicalgeneticistsingeneticadvocacygroups.AmJMedGenetA.2003May15;119A(1):89-92.PMID:12707968

20. TerrySF,BurkeW.Banningpensandpadsmissesthemainpoint.AmJBioeth.2003Summer;3(3):63-5.PMID:14594500

21. TerrySF.Learninggenetics.HealthAff(Millwood).2003Sep-Oct;22(5):166-71.PMID:1451589222. BercovitchL,Robinson-BostomL,TerrySF,Pasquali-RonchettiI,HarristT.Re:yellowishpapulesonflexural

areasinachild.PediatrDermatol.2003Nov-Dec;20(6):543-5;authorreply545.PMID:1465158223. GheduzziD,SammarcoR,QuaglinoD,BercovitchL,TerrySF,TaylorW,RonchettiIP.Excutaneous

ultrastructuralalternationsinpseudoxanthomaelasticum.UltrastructPathol.2003Nov-Dec;27(6):375-84.PMID:14660276

24. TheInternationalHapMapConsortium(Terry,SF,member,Populationsgroup).IntegratingethicsandscienceintheInternationalHapMapProject.NatRevGenet.2004Jun;5(6):467-75.PMID:15153999

25. BeskowLM,BotkinJR,DalyM,JuengstET,LehmannLS,MerzJF,PentzR,PressNA,RossLF,SugarmanJ,SussweinLR,TerrySF,AustinMA,BurkeW.Ethicalissuesinidentifyingandrecruitingparticipantsforfamilialgeneticresearch.AmJMedGenetA.2004Nov1;130A(4):424-31.PMID:15455364

26. BercovitchL,LeRouxT,TerrySF,WeinstockMA.Pregnancyandobstetricaloutcomesinpseudoxanthomaelasticum.BrJDermatol.2004Nov;151(5):1011-8.PMID:15541079

27. BercovitchRS,JanuarioJA,TerrySF,BoekelheideK,PodisAD,DupuyDE,BercovitchLG.Testicularmicrolithiasisinassociationwithpseudoxanthomaelasticum.Radiology.2005Nov;237(2):550-4.PMID:16244264

7

28. TerrySF,TerryPF.AconsumerperspectiveonforensicDNAbanking.JLawMedEthics.2006Summer;34(2):408-14.PMID:16789963

29. TerrySF,TerryPF,RauenK,UittoJ,BercovitchL.Advocacygroupsasresearchorganizations:thePXEInternationalexample.NatRevGenet.2007Feb;8(2):157-64.PMID:17230202

30. ShiY,TerrySF,TerryPF,BercovitchLG,GerardGF.Developmentofarapid,reliablegenetictestforpseudoxanthomaelasticum.JMolDiagn.2007Feb;9(1):105-12.PMID:17251343

31. VanakkerOM,MartinL,GheduzziD,LeroyBP,LoeysBL,GuerciVI,MatthysD,TerrySF,CouckePJ,Pasquali-RonchettiI,DePaepeA.Pseudoxanthomaelasticum-likephenotypewithcutislaxaandmultiplecoagulationfactordeficiencyrepresentsaseparategeneticentity.JInvestDermatol.2007Mar;127(3):581-7.PMID:17110937

32. HerrickEK,FogelCE,ChristensenK,TerrySF,McInerneyJD.Providers’knowledgeofgenetics:asurveyof5,915Individualsandfamilieswithgeneticconditions.GenetMed.2007May;9(5):259-67.PMID:17505202

33. PfendnerEG,VanakkerO,TerrySF,VourthisS,McAndrewPE,McClainMR,FrattaS,MaraisAS,HaririS,CouckePJ,RamsayM,ViljoenD,TerryPF,DePaepeA,UittoJ,BercovitchLG.MutationdetectionintheABCC6geneandgenotype-phenotypeanalysisinalargeinternationalcaseseriesaffectedbypseudoxanthomaelasticum.JMedGenet.2007Oct;44(10):621-8.PMID:17617515

34. VanakkerOM,LeroyBP,CouckeP,BercovitchLG,UittoJ,ViljoenD,TerrySF,VanAckerP,MatthysD,LoeysB,DePaepeA.Novelclinico-molecularinsightsinpseudoxanthomaelasticumprovideanefficientmolecularscreeningmethodandacomprehensivediagnosticflowchart.HumMutat.2008Jan;29(1):205.PMID:18157818

35. WolfSM,LawrenzFP,NelsonCA,KahnJP,ChoMK,ClaytonEW,FletcherJG,GeorgieffMK,HammerschmidtD,HudsonK,IllesJ,KapurV,KeaneMA,KoenigBA,LeroyBS,McFarlandEG,ParadiseJ,ParkerLS,TerrySF,VanNessB,WilfondBS.Managingincidentalfindingsinhumansubjectsresearch:analysisandrecommendations.JLawMedEthics.2008Summer;36(2):219-48,211.PMID:18547191

36. Terry,SF.Genetictesting.GenetTest.2008Jun;12(2):175-6.PMID:1855416137. PetruccioC,MillsShawKR,BoughmanJ,FernandezC,HarlowI,KruesiM,KylerP,Lloyd-PuryearMA,

O'LearyJ,SkillmanA,TerrySF,McKainF.Healthychoicesthroughfamilyhistory:acommunityapproachtofamilyhistoryawareness.CommunityGenet.2008;11(6):343-51.PMID:18690002

38. Terry,SF.Whatdoleadersofdisease-specificadvocacyorganizationsknowaboutpharmacogenomicsandbiomarkers,anyway?FutureMedicine.2009;6(2):171-81.

39. RamsayM,GreenbergT,LombardZ,LabrumR,LubbeS,AronS,MaraisAS,TerrySF,BercovitchL,ViljoenD.SpectrumofgeneticvariationattheABCC6locusinSouthAfricans:Pseudoxanthomaelasticumpatientsandhealthyindividuals.JDermatolSci.2009Jun;54(3):198-204.PMID:19339160

40. KhouryMJ,FeeroWG,ReyesM,CitrinT,FreedmanA,LeonardD,BurkeW,CoatesR,CroyleR,EdwardsK,KardiaS,McBrideC,ManolioT,RandhawaG,RasoolyR,StPierreJ,TerrySF;GAPPNetPlanningGroup.Thegenomicapplicationsinpracticeandpreventionnetwork.GenetMed.2009Jul;11(7):488-94.PMID:19471162

41. KhouryMJ,McBrideCM,SchullySD,IoannidisJP,FeeroWG,JanssensAC,GwinnM,Simons-MortonDG,BernhardtJM,CargillM,ChanockSJ,ChurchGM,CoatesRJ,CollinsFS,CroyleRT,DavisBR,DowningGJ,DurossA,FriedmanS,GailMH,GinsburgGS,GreenRC,GreeneMH,GreenlandP,GulcherJR,HsuA,HudsonKL,KardiaSL,KimmelPL,LauerMS,MillerAM,OffitK,RansohoffDF,RobertsJS,RasoolyRS,StefanssonK,TerrySF,TeutschSM,TrepanierA,WankeKL,WitteJS,XuJ.TheScientificFoundationforpersonalgenomics:recommendationsfromaNationalInstitutesofHealth-CentersforDiseaseControlandPreventionmultidisciplinaryworkshop.GenetMed.2009Aug;11(8):559-67.PMID:19617843

42. HagaSB,TerrySF.Ensuringthesafeuseofgenomicmedicineinchildren.ClinPediatr(Phila).2009Sep;48(7):703-8.PMID:19448129

8

43. DresslerLG,TerrySF.HowwillGINAinfluenceparticipationinpharmacogenomicsresearchandclinicaltesting?ClinPharmacolTher.2009Nov;86(5):472-5.PMID:19844223

44. PlompAS,BergenAA,FlorijnRJ,TerrySF,ToonstraJ,vanDijkMR,deJongPT.Pseudoxanthomaelasticum:Widephenotypicvariationinhomozygotesandnosignsinheterozygotesforthec.3775delTmutationinABCC6.GenetMed.2009Dec;11(12):852-8.PMID:19904211

45. CalongeN,GreenNS,RinaldoP,Lloyd-PuryearM,DoughertyD,BoyleC,WatsonM,TrotterT,TerrySF,HowellRR.Committeereport:Methodforevaluatingconditionsnominatedforpopulation-basedscreeningofnewbornsandchildren.GenetMed.2010Mar;12(3):153-9.PMID:20154628

46. TerrySF,AustinC,IngleseJ,MeekerD,TerryPF.Assay,preclinical,andclinicalbrickwallsandopportunitiesforsystemchangethroughGRANDRx.AssayDrugDevTechnol.2010Apr;8(2):128-34.PMID:20307201

47. TerrySF.Acceleratemedicalbreakthroughsbyendingdiseaseearmarks.NatRevGenet.2010May;11(5):310.PMID:20414986

48. HornEJ,BialickJ,TerrySF.Landscapeanalysisofregistriesandbiobanks–atoolfordiseaseadvocacyorganizationstoenhancetranslationalresearchsystems.BiopreservBiobank.2010Jun;8(2):115-7.PMID:24845940

49. GitlinJM,FischbeckK,CrawfordTO,CwikV,FleischmanA,GonyeK,HeineD,HobbyK,KaufmannP,KeilesS,MacKenzieA,MusciT,PriorT,Lloyd-PuryearM,SugarmanEA,TerrySF,UrvT,WangC,WatsonM,YaronY,FrosstP,HowellRR.Carriertestingforspinalmuscularatrophy.GenetMed.2010Oct;12(10):621-2.PMID:20808230

50. TerrySF,KrokoskyA.Rareconditions:wheredoprimarycareandgeneticdiseasesintersect?JAAPA.2010Nov;23(11):63-4.PMID:21086896

51. TerrySF,TerryPF.Powertothepeople:participantownershipofclinicaltrialdata.SciTranslMed.2011Feb9;3(69):69cm3.PMID:21307299

52. TerrySF,HornEJ,ScottJ,andTerryPF.GeneticAllianceRegistryandBioBank:anoveldiseaseadvocacy-drivenresearchsolution.PersonalizedMedicine.2011Mar;8(2):207-13.

53. BercovitchL,MartinL,ChassaingN,HefferonTW,BessisD,VanakkerO,TerrySF.Acquiredpseudoxanthomaelasticumpresentingafterlivertransplantation.JAmAcadDermatol.2011May;64(5):873-8.PMID:21397982

54. O'LearyJ,EdelsonV,GardnerN,TerrySF,etal.Community-centeredfamilyhealthhistory:acustomizedapproachtoincreasedhealthcommunicationandawareness.ProgCommunityHealthPartnersh.2011Summer;5(2):113-22.PMID:21623013

55. TherrellBLJr,HannonWH,BaileyDBJr,GoldmanEB,MonacoJ,Norgaard-PedersenB,TerrySF,JohnsonA,HowellRR.CommitteeReport:Considerationsandrecommendationsfornationalguidanceregardingtheretentionanduseofresidualdriedbloodspotspecimensafternewbornscreening.GenetMed.2011Jul;13(7):621-4.PMID:21602691

56. UittoJ,BercovitchL,TerrySF,TerryPF.Pseudoxanthomaelasticum:progressindiagnosticsandresearchtowardstreatment:Summaryofthe2010PXEInternationalResearchMeeting.AmJMedGenetA.2011Jul;155A(7):1517-26.PMID:21671388

57. YooJY,BlumRR,SingerGK,SternDK,EmanuelPO,FuchsW,PhelpsRG,TerrySF,andLebwohlMG.Arandomizedcontrolledtrialoforalphosphatebindersinthetreatmentofpseudoxanthomaelasticum.JAmAcadDermatol.2011Aug;65(2):341-8.PMID:21496949

58. Oster-GraniteML,ParisiMA,AbbedutoL,BerlinDS,BodineC,BynumD,CaponeG,CollierE,HallD,KaeserL,KaufmannP,KrischerJ,LivingstonM,McCabeLL,PaceJ,PfenningerK,RasmussenSA,ReevesRH,RubinsteinY,ShermanS,TerrySF,SiewhittenM,WilliamsS,McCabeER,MaddoxYT.Downsyndrome:nationalconferenceonpatientregistries,researchdatabases,andbiobanks.MolGenetMetab.2011Sep-Oct;104(1-2):13-22.PMID:21835664

9

59. AymeS,TerrySF,GroftS.Responseto'Mutation(variation)databasesandregistries:arationaleforcoordinationofefforts':anIRDiRCperspective.NatRevGenet.2011Oct25.

60. SchmidtJL,Castellanos-BrownK,ChildressS,BonhommeN,OktayJS,TerrySF,KylerP,DavidoffA,GreeneC.Theimpactoffalse-positivenewbornscreeningresultsonfamilies:aqualitativestudy.GenetMed.2012Jan;14(1):76-80.PMID:22237434

61. MoorePJ,GratzerW,LieberC,EdelsonV,O'LearyJ,TerrySF.IonaCollegecommunitycenteredfamilyhealthhistoryproject:lessonslearnedfromstudentfocusgroups.JGenetCouns.2012Feb;21(1):127-35.PMID:21830165

62. LandyDC,BrinichMA,ColtenME,HornEJ,TerrySF,SharpRR.Howdiseaseadvocacyorganizationsparticipateinclinicalresearch:asurveyofgeneticorganizations.GenetMed.2012Feb;14(2):223-8.PMID:22261756

63. TerrySF,ChristensenKD,MetoskyS,RudofskyG,DeignanKP,MartinezH,Johnson-MooreP,CitrinT.Communityengagementaboutgeneticvariationresearch.PopulHealthManag.2012Apr;15(2):78-89.PMID:21815821

64. WolfSM,CrockBN,VanNessB,LawrenzF,KahnJP,BeskowLM,ChoMK,ChristmanMF,GreenRC,HallR,IllesJ,KeaneM,KnoppersBM,KoenigBA,KohaneIS,LeroyB,MaschkeKJ,McGeveranW,OssorioP,ParkerLS,PetersenGM,RichardsonHS,ScottJA,TerrySF,WilfondBS,WolfWA.Managingincidentalfindingsandresearchresultsingenomicresearchinvolvingbiobanksandarchiveddatasets.GenetMed.2012Apr;14(4):361-84.PMID:22436882

65. KayeJ,CurrenL,AndersonN,EdwardsK,FullertonSM,KanellopoulouN,LundD,MacarthurDG,MascalzoniD,ShepherdJ,TaylorPL,TerrySF,WinterSF.Frompatientstopartners:participant-centricinitiativesinbiomedicalresearch.NatRevGenet.2012Apr3;13(5):371-6.PMID:22473380

66. HunterLE,HopferC,TerrySF,CoorsME.Reportingactionableresearchresults:sharedsecretscansavelives.SciTranslMed.2012Jul18;4(143):143cm8.PMID:22814848.

67. FormanJ,CoyleF,Levy-FischJ,RobertsP,TerrySF,LeggeM.Screeningcriteria:theneedtodealwithnewdevelopmentsandethicalissuesinnewbornmetabolicscreening.JCommunityGenet.2013Jan;4(1):59-67.PMID:23055099

68. BaxterK,HornE,Gal-EddN,ZonnoK,O'LearyJ,TerryPF,TerrySF.Anendtothemyth:thereisnodrugdevelopmentpipeline.SciTranslMed.2013Feb6;5(171):171cm1.PMID:23390245

69. LiQ,GuoH,ChouD,HarringtonDJ,ShurgersLJ,TerrySF,UittoJ.Warfarinacceleratesectopicmineralizationinabcc6(-/-)mice:clinicalrelevancetopseudoxanthomaelasticum.AmJPathol.2013Apr;182(4):1139-50.PMID:23415960

70. McGuireAL,JoffeS,KoenigBA,BieseckerBB,McCulloughLB,Blumenthal-BarbyJS,CaulfieldT,TerrySF,GreenRC.Point-counterpoint.EthicsandGenomicIncidentalFindings.Science.2013May16;340(6136):1047-8.PMID:23686340

71. UittoJ,VáradiA,BercovitchL,TerryPF,TerrySF.PseudoxanthomaElasticum:ProgressinResearchTowardTreatment:Summaryofthe2012PXEInternationalResearchMeeting.JInvestDermatol.2013Jun;133(6):1444-9.PMID:23673496

72. TerrySF.Diseaseadvocacyorganizationscatalyzetranslationalresearch.FrontGenet.2013Jun4;4:101.PMID:23761807

73. TerrySF,LeshnerAI.AssessingNIH'sBigIdea.SciTranslMed.2013Jul31;5(196):196ed11.PMID:23903753

74. UittoJ,JiangQ,VaradiA,BercovitchLG,TerrySF.Pseudoxanthomaelasticum:Diagnosticfeatures,classification,andtreatmentoptions.ExpertOpinOrphanDrugs.2014Jun1;2(6):567-77.PMID:25383264

75. GrahamCE,MolsterC,BaynamGS,BushbyK,HanssonM,KoleA,MoraM,MonacoL,BellgardM,CarpentieriD,PosadaM,RiessO,RubinsteinYR,SchaeferF,TaruscioD,TerrySF,ZatloukalK,KnoppersB,

10

LochmüllerH,DawkinsHJS.Currenttrendsinbiobankingforrarediseases:areview.JournalofBiorepositoryScienceforAppliedMedicine.2014Nov21;2:49-61.

76. SchullySD,LamTK,DotsonWD,ChangCQ,AronsonN,BirkelandML,BrewsterSJ,BocciaS,BuchananAH,CalongeN,CalzoneK,DjulbegovicB,GoddardKA,KleinRD,KleinTE,LauJ,LongR,LymanGH,MorganRL,PalmerCG,RellingMV,RubinsteinWS,SwenJJ,TerrySF,WilliamsMS,KhouryMJ.Evidencesynthesisandguidelinedevelopmentingenomicmedicine:currentstatusandfutureprospects.GenetMed.2015Jan;17(1):63-7.PMID:24946156

77. LiQ,SundbergJP,LevineMA,TerrySF,UittoJ.TheeffectsofbisphosphonatesonectopicsofttissuemineralizationcausedbymutationsintheABCC6gene.CellCycle.2015;14(7):1082-9.PMID:25607347

78. FalkMJ,ShenL,GonzalezM,LeipzigJ,LottMT,StassenAP,DiromaMA,Navarro-GomezD,YeskeP,BaiR,BolesRG,BrilhanteV,RalphD,DaReJT,SheltonR,TerrySF,ZhangZ,CopelandWC,vanOvenM,ProkischH,WallaceDC,AttimonelliM,KrotoskiD,ZuchnerS,GaiX.MitochondrialDiseaseSequenceDataResource(MSeqDR):Aglobalgrass-rootsconsortiumtofacilitatedeposition,curation,annotation,andintegratedanalysisofgenomicdataforthemitochondrialdiseaseclinicalandresearchcommunities.MolGenetMetab.2015Mar;114(3):388-96.PMID:25542617

79. KringenMK,StormoC,BergJP,TerrySF,VockeCM,RizviS,HendigD,PiehlerAP.CopynumbervariationintheATP-bindingcassettetransporterABCC6geneandABCC6pseudogenesinpatientswithpseudoxanthomaelasticum.MolGenetGenomicMed.2015May;3(3):233-7.doi:10.1002/mgg3.137.Epub2015Mar8.PubMedPMID:26029710;PubMedCentralPMCID:PMC4444165.

80. DavidSP,JohnsonSG,BergerAC,FeeroWG,TerrySF,GreenLA,PhillipsRLJr,GinsburgGS.MakingPersonalizedHealthCareEvenMorePersonalized:InsightsFromActivitiesoftheIOMGenomicsRoundtable.AnnFamMed.2015Jul-Aug;13(4):373-80.doi:10.1370/afm.1772.PubMedPMID:26195686;PubMedCentralPMCID:PMC4508182.

81. LambertsonKF,DamianiSA,MightM,SheltonR,TerrySF.Participant-DrivenMatchmakingintheGenomicEra.HumMutat.2015Oct;36(10):965-73.doi:10.1002/humu.22852.Epub2015Aug27.PubMedPMID:26252162.

82. PhilippakisAA,AzzaritiDR,BeltranS,BrookesAJ,BrownsteinCA,BrudnoM,BrunnerHG,BuskeOJ,CareyK,DollC,DumitriuS,DykeSO,denDunnenJT,FirthHV,GibbsRA,GirdeaM,GonzalezM,HaendelMA,HamoshA,HolmIA,HuangL,HurlesME,HuttonB,KrierJB,MisyuraA,MungallCJ,PaschallJ,PatenB,RobinsonPN,SchiettecatteF,SobreiraNL,SwaminathanGJ,TaschnerPE,TerrySF,WashingtonNL,ZüchnerS,BoycottKM,RehmHL.TheMatchmakerExchange:APlatformforRareDiseaseGeneDiscovery.HumMutat.2015Oct;36(10):915-21.doi:10.1002/humu.22858.PubMedPMID:26295439.

83. TerrySF,Patrick-LakeB.Hearingvoices:FDAseeksadvicefrompatients.SciTranslMed.2015Nov11;7(313):313ed12.doi:10.1126/scitranslmed.aad5866.PubMedPMID:26560354.

84. DelaneySK,HultnerML,JacobHJ,LedbetterDH,McCarthyJJ,BallM,BeckmanKB,BelmontJW,BlossCS,ChristmanMF,CosgroveA,DamianiSA,DanisT,DelledonneM,DoughertyMJ,DudleyJT,FaucettWA,FriedmanJR,HaaseDH,HaysTS,HeilsbergS,HuberJ,KaminskyL,LedbetterN,LeeWH,LevinE,LibigerO,LindermanM,LoveRL,MagnusDC,MartlandA,McClureSL,MegillSE,MessierH,NussbaumRL,PalaniappanL,PatayBA,PopovichBW,QuackenbushJF,SavantMJ,SuMM,TerrySF,TuckerS,WongWT,GreenRC.Towardclinicalgenomicsineverydaymedicine:perspectivesandrecommendations.ExpertRevMolDiagn.2016Jan25.[Epubaheadofprint]PubMedPMID:26810587

85. TerrySF.LifeasaNumerator:PuttingthePersoninPersonalGenomics.Applied&TranslationalGenetics.(InPress)doi:10.1016/j.atg.2016.01.007

86. LiQ,ArányiT,VáradiA,TerrySF,UittoJ.ResearchProgressinPseudoxanthomaElasticumandRelatedEctopicMineralizationDisorders.JInvestDermatol.2016Mar;136(3):550-6.doi:10.1016/j.jid.2015.10.065.PubMedPMID:26902123;PubMedCentralPMCID:PMC4765001.

11

87. EdwardsKA,TerrySF,GoldD,HornEJ,SchwartzM,StuartM,VernonSD.RealizingOurPotentialinBiobanking:DiseaseAdvocacyOrganizationsEnlivenTranslationalResearch.BiopreservBiobank.2016Apr8.[Epubaheadofprint]PubMedPMID:27058463.

88. Baker,DixieB.;Kaye,Jane;andTerry,SF(2016)"Privacy,Fairness,andRespectforIndividuals,"eGEMs(GeneratingEvidence&Methodstoimprovepatientoutcomes):Vol.4:Iss.2,Article7.DOI:http://dx.doi.org/10.13063/2327-9214.1207

Perspectives1. ZonnoKD,TerrySF.Registryofgenetictests:Acriticalsteppingstonetoimprovingthegenetictesting

system.GenetTestMolBiomarkers.2009Apr;13(2):153-4.PMID:19371210.2. ZonnoKD,TerryPF,TerrySF.Ameasureoftruthingenetictesting.GenetTestMolBiomarkers.2009

Jun;13(3):285-6.PMID:194730753. ZonnoKD,TerrySF.Transparency,openness,andgenetictesting.GenetTestMolBiomarkers.2009

Aug;13(4):433-4.PMID:196635994. ZonnoKD,TerrySF.Collaboration:thefoundationforsuccessinrarediseasegenetictestdevelopment.

GenetTestMolBiomarkers.2009Oct;13(5):553-4.PMID:198146125. TerrySF.Geneticinformationnondiscriminationactinsuranceprotectionsissued.GenetTestMol

Biomarkers.2009Dec;13(6):709-10.PMID:200015796. TerrySF.Genetictestingandbiomarkersinthenewdecade.GenetTestMolBiomarkers.2010

Feb;14(1):1-2.PMID:201439097. TerrySF.Standardsforpersonalizedmedicine.GenetTestMolBiomarkers.2010Apr;14(2):155-6.PMID:

203844558. TerrySF.FDAandCLIAoversightofadvanceddiagnosticsandbiomarkertests.GenetTestMolBiomarkers.

2010Jun;14(3):285-7.PMID:205789409. RitsickJ,TerrySF.Notyourgrandfather'sgenetictestingoversight.GenetTestMolBiomarkers.2010

Aug;14(4):439.PMID:2072246510. KrokoskyA,TerrySF.Internationalstandardcytogenomicarrayconsortium.GenetTestMolBiomarkers.

2010Oct;14(5):585.PMID:2095809311. FieldA,KrokoskyA,TerrySF.Direct-to-consumermarketingofgenetictests:accessdoesnotreflectclinical

utility.GenetTestMolBiomarkers.2010Dec;14(6):731-2.PMID:2115867812. FieldA,KrokoskyA,TerrySF.Answeringthehardquestions:theGeneticTestingRegistryanditsrequest

forinformation.GenetTestMolBiomarkers.2011Jan-Feb;15(1-2):1-2.PMID:2127565113. BaxterK,FieldA,TerrySF."Insufficientevidence"isn'tsufficientanymore.GenetTestMolBiomarkers.

2011Mar;15(3):115-6.PMID:2135208814. FieldA,BaxterK,TerrySF.Frombenchtopracticetopopulationhealthimpact:barrierstorealizingthe

publichealthandclinicalpromiseofbasicscientificdiscovery.GenetTestMolBiomarkers.2011Apr;15(4):191-2.PMID:21428744

15. FieldA,BaxterK,TerrySF.RecommendationsoftheEuropeanSocietyofHumanGeneticsongenetictestingforcommondisorders.GenetTestMolBiomarkers.2011May;15(5):291-2.PMID:21561286

16. FieldA,BaxterK,TerrySF.Understandinggene-environmentinteractions.GenetTestMolBiomarkers.2011Jun;15(6):371-2.PMID:21615295

17. BaxterK,TerrySF.Internationalrarediseaseresearchconsortiumcommitstoaggressivegoals.GenetTestMolBiomarkers.2011Jul-Aug;15(7-8):465.PMID:21762001

18. BaxterK,KrokoskyA,TerrySF.Riskybusiness:theneedforhypothesis-generatingresearch.GenetTestMolBiomarkers.2011Sep;15(9):577-8.PMID:21905842

19. BaxterK,TerrySF.Cometogether,rightnow!GenetTestMolBiomarkers.2011Oct;15(10):665-6.PMID:21992487

12

20. HornEJ,BaxterK,O'LearyJ,TerrySF.Exploringprioritiesforpublichealthgenomics.GenetTestMolBiomarkers.2011Nov;15(11):741-2.PMID:22092011

21. HornEJ,EdwardsK,TerrySF.Engagingresearchparticipantsandbuildingtrust.GenetTestMolBiomarkers.2011Dec;15(12):839-40.PMID:22181985

22. HornEJ,TerrySF.Regulatinggenetictests:issuesthatguidepolicydecisions.GenetTestMolBiomarkers.2012Jan;16(1):1-2.PMID:22276932

23. HornEJ,TerrySF.Precisionmedicine:generatingreal-worldevidenceforcompaniondiagnostics.GenetTestMolBiomarkers.2012Feb;16(2):75-6.PMID:22335828.

24. AlbuquerqueW,HornEJ,TerrySF.BeastofBurden?CommentsontheNIHGeneticTestingRegistry.GenetTestMolBiomarkers.2012Mar;16(3):155-6.PMID:22420527.

25. Horn,EJ,Terry,SF.(2012).Genetictestingregistrylaunched.GenetTestMolBiomarkers.2012Apr;16(4):227-8.PMID:22515266

26. HornEJ,TerrySF.Permissiontosharebiospecimens.GenetTestMolBiomarkers.2012May;16(5):311-2.PMID:22621385

27. HornEJ,TerrySF.Consumerperceptionsofgenetictesting.GenetTestMolBiomarkers.2012Jun;16(6):463-4.PMID:22715991

28. SilvaLF,TerrySF.Notjusttrialsandtribulations-weneedresults!GenetTestMolBiomarkers.2012Jul;16(7):649-50.PMID:22799609

29. CoppermanC,ThongkhamD,TerrySF.Aretheyreallyincidentalafterall?GenetTestMolBiomarkers.2012Aug;16(8):833-4.PMID:22928695

30. CoppermanC,TerrySF.Beyondgenetictestsandbiomarkers:whatabouttherapeuticmisconception?GenetTestMolBiomarkers.2012Sep;16(9):999-1000.PMID:22963603.

31. ThongkhamD,TerrySF.Companiondiagnostics:thenextstepinpersonalizedclinicalcare.GenetTestMolBiomarkers.2012Oct;16(10):1155-6.PMID:23057592

32. WilberM,TerrySF.Frombasepairstobedside…andbeyond.GenetTestMolBiomarkers.2012Nov;16(11):1255-6.PMID:23101591

33. JahnkeCM,StarkE,TerrySF,BonhommeN.Isthisagenesisinprenataltesting:genomicknowledge,riskorbenefit?GenetTestMolBiomarkers.2012Dec;16(12):1347-8.PMID:23153002

34. GonzalezM,TerrySF.Sharingclinicalresearchdata:perspectivesonanIOMworkshop.GenetTestMolBiomarkers.2013Jan;17(1):1-2.PMID:23237620

35. JahnkeC,TerrySF.Testnow,sharenow.GenetTestMolBiomarkers.2013Feb;17(2):89-90.PMID:23336572

36. TerrySF,SheltonR,BiggersG,BakerD,EdwardsK.Thehaystackismadeofneedles.GenetTestMolBiomarkers,2013Mar;17(3):175-7.PMID:23428177

37. TerrySF,BonhommeN.Nothingaboutuswithoutus.GenetTestMolBiomarkers.2013May;17(5):357-8.PMID:23611249

38. TerrySF.Don'tjustinviteustothetable:authenticcommunityengagement.GenetTestMolBiomarkers.2013Jun;17(6):443-5.PMID:23721344

39. TerrySF.Let'stryit:meforyou.GenetTestMolBiomarkers.2013Jul;17(7):513-4.PMID:2381984540. NguyenS,TerrySF.Freethedata:theendofgeneticdataastradesecrets.GenetTestMolBiomarkers.

2013Aug;17(8):579-80.PMID:2390557941. SaulsberryK,andTerrySF.Theneedtobuildtrust:aperspectiveondisparitiesingenetictesting.Genet

TestMolBiomarkers.2013Sep;17(9):647-8.PMID:2400088842. SteinDT,TerrySF.Reformingbiobankconsentpolicy:anecessarymoveawayfrombroadconsenttoward

dynamicconsent.GenetTestMolBiomarkers.2013Dec;17(12):855-6.PMID:2428358343. LambertsonK,TerrySF.FreeTheData.GenetTestMolBiomarkers.2014Jan;18(1):1-2.PMID:24401097

13

44. TerrySF.Acallforparticipatoryoversight.GenetTestMolBiomarkers.2014Feb;18(2):71-2.PMID:24506510

45. TerrySF.Sharingyourthoughtsaboutsharingclinicaltrialdata.GenetTestMolBiomarkers.2014Apr;18(4):221-2.PMID:24689892

46. MukherjeeS,TerrySF.Companions:testsanddrugforbetterhealthcare.GenetTestMolBiomarkers.2014May;18(5):287-8.PMID:24786598

47. TerrySF.Theglobalallianceforgenomics&health.GenetTestMolBiomarkers.2014Jun;18(6):375-6.PMID:24896853

48. GerdesM,TerrySF.Fiveprinciples:returninggenetictestingresultstoresearchparticipants.GenetTestMolBiomarkers.2014Jul;18(7):453-4.PMID:25014338

49. RangiSK,TerrySF.Genetictestingandnativepeoples:thecallforcommunity-basedparticipatoryresearch.GenetTestMolBiomarkers.2014Aug;18(8):531-2.PMID:25089910

50. ComminsJ,TerrySF.Movingforward:puttinggenetictestingtouse.GenetTestMolBiomarkers.2014Oct;18(10):663-4.PMID25197960

51. PathakB,TerrySF.FDA’sframeworkforregulatoryoversightofLDTs.GenetTestMolBiomarkers.2014Dec;18(12):785-6.PMID:25469801

52. LiAM,TerrySF.Linkingpersonalhealthdatatogenomicresearch.GenetTestMolBiomarkers.2015Jan;19(1):1-2.PMID:25549296

53. TerrySF.Obama’sPrecisionMedicineInitiative.GenetTestMolBiomarkers.2015Mar;19(3):113-4.PMID:25751403

54. TerrySF.Participatinginnextgenerationsequencing.GenetTestMolBiomarkers.2015Apr;19(4):174.PMID:25849720

55. LutinsE,TerrySF.Willthewallcometumblingdown?GenetTestMolBiomarkers.2015May;19(5):226-7.PMID:25969965

56. SchulzR,TerrySF.Thescience,applications,andethicalconcernssurroundinglowcopynumberDNAanalysis.GenetTestMolBiomarkers.2015Jun;19(6):281-2.PMID:26053787.

57. EllisK,TerrySF.DangerousLiaisons:ConnectingCRISPR/Cas9toClinicalScience.GenetTestMolBiomarkers.2015Aug;19(8):409-10.PMID:26225797.

58. CaldwellL,TerrySF.21st-CenturyHealthcarePolicyandtheRegulationofLaboratory-DevelopedTests.GenetTestMolBiomarkers.2015Sep;19(9):467-8.PMID:26368293.

59. LutinsE,TerrySF.NISTRM8398:StandardizingDiscoveries.GenetTestMolBiomarkers.2015Nov;19(11):589-590.PMID:26502080.

60. BalajiD,TerrySF.BenefitsandRisksofSharingGenomicInformation.GenetTestMolBiomarkers.2015Nov20.[Epubaheadofprint]PubMedPMID:26588592.

61. TerrySF.TheDaythePresidentoftheUnitedStatesSaid"ThatDataisMine".GenetTestMolBiomarkers.2016Mar22.[Epubaheadofprint]PubMedPMID:27003240.

62. LambertsonK,TerrySF.GeneticTestingandtheWorkplace.GenetTestMolBiomarkers.2016Mar;20(3):103-4.doi:10.1089/gtmb.2016.29011.sjt.Epub2016Feb19.PubMedPMID:26894829.

63. TerryPF,TerrySF.ToPayorNottoPay?IsthattheQuestion?GenetTestMolBiomarkers.2016Feb;20(2):53-4.doi:10.1089/gtmb.2016.29010.sjt.Epub2016Jan28.PubMedPMID:26859258.

64. TerrySF.TheDaythePresidentoftheUnitedStatesSaid"ThatDataisMine".GenetTestMolBiomarkers.2016Apr;20(4):165-6.doi:10.1089/gtmb.2016.29013.sjt.Epub2016Mar22.PubMedPMID:27003240.

65. TerrySF.NewInstituteofMedicineReportonMolecularBiomarkers.GenetTestMolBiomarkers.2016Apr14.[Epubaheadofprint]PubMedPMID:27077401.

BookChapters

14

1. "AdvocacyGroupsandtheNewGenetics",co-authoredwithAlanStockdale,inTheDouble-EdgedHelix:SocialImplicationsforGeneticsinaDiverseSociety,publishedbyJohnsHopkinsUniversityPress,2002.

2. “ConsumerPerspectivesonLifeInsurance”,co-authoredwithWendyUhlmanninRothstein,M.A.ed.(2004).GeneticsandLifeInsurance:MedicalUnderwritingandSocialPolicy.Cambridge,Massachusetts.TheMITPress.

3. “GeneticInformationNondiscriminationAct”,inGeneticsandGenomicsforNursing,editors:CaroleAKennerandJudithA.Lewis,publishedbyPrenticeHall,October12,2012.

4. “Theglobaldrugdevelopmentprocess:Whataretheimplicationsforrarediseasesandwheremustwego?”,withJaysonSwanson,inRareDiseases:ChallengesandOpportunitiesforSocialEntrepreneurs,publishedbyGreenleafPress,2013.

5. “WithoutMudthereisnoLotus”,inTheReluctantInnovator,editor:KennethBanks.December13,2013.6. “DiseaseAdvocacyOrganizations”,withCarolineKant,inOrphanDrugsandRareDiseases,publishedby

theRoyalSocietyofChemistry,UK.February2014.PapersPresented2001 Empoweringfamiliesinthegeneticsera:acasestudy,AnnualCongress,SouthAfricanSociological

Association,Pretoria,SouthAfrica,July2,20012001 Genomics,patentsandpatientrights–redefiningtheboundariesbetweenprivateandpublic,

AmericanSocietyofSociologistsAnnualMeeting,AnaheimCA,August18-21,20012001 ThirdPartyIssuesandInformedConsent,ForumofThirdPartyRightsandInformedConsent,Virginia

CommonwealthUniversity,RichmondVA2003 IntellectualPropertyandBenefitSharing–aconsumerperspective,CommercializingtheGenome,

UniversityofPennsylvania,PhiladelphiaPA2004 ResultsofthePXEEpidemiologicalStudy,PXEResearchMeeting,BethesdaMD,October14-15,20042004 ConsumerIssuesinPharmacogenetics,AmericanSocietyofHumanGenetics,Toronto,Canada,

October26-30,20042005 ClinicalTrialRegistries,InternationalPharmaceuticalComplianceSummit,PhiladelphiaPA,April1,

20052005 GeneticAllianceasaModelCoalition,BioVision,Lyon,France,April14,20052005 AdvocacyOwnedandManagedSampleCollections,DNA,Health,andSocialJustice:ACommunity

ForumonGenetics,UniversityofWashington,SeattleWA,May21,20052005 AdvocatesMoveResearch,BrazilianAnnualClinicalGeneticsMeeting,Curitiba,Brazil,June9,20052005 TargetedTherapeutics:ConsumerConcerns,2ndAnnualSummitonTargetedTherapeutics,

WashingtonDC,June13,20052005 ConsumerPerspectiveonClinicalTrialRegistries,InstituteofMedicine,WashingtonDC,June27,20052005 StateoftheGeneticAlliance,GeneticAllianceAnnualMeeting,WashingtonDC,July29,20052005 WomeninAdvocacy,AssociationforPoliticsandtheLifeScienceAnnualMeeting,WashingtonDC,

September1,20052005 PublicAttitudesTowardsGenetics:ConsumerSurvey,PersonalizedMedicineCoalition,WashingtonDC,

September7,20052005 ResearchRepositories:WhyTheyMakeaDifference,TheSocietyofReproductiveMedicineAnnual

Meeting,Montreal,Canada,October16,20052005 AdvocacyatitsBest:ForgingtheResearchAgenda,DukeUniversityInstituteforGenomicSciencesand

PolicySeminar,October17,20052005 GeneticInformationNondiscrimination–WhereWeNeedtoGo,DukeUniversityFreshmanFOCUS

programlecture,DurhamNC,October17,2005

15

2005 ImpactandValueofInformationforConsumers,AmericanSocietyofHumanGeneticsAnnualMeeting,SaltLakeCityUT,October26,2005

2006 Providers’KnowledgeofGenetics:ASurveyof5,915IndividualsandFamilieswithGeneticConditions,NCHPEGAnnualMeeting,BethesdaMD,February2,2006

2006 AdvocacyinGenetics:CoordinatingResearch,McKusick-NathansInstituteofGeneticMedicineSeminar,BaltimoreMD,March2,2006

2006 AdvocacyOrganizationsandtheRegulationofGeneticTests,GeneticsandPublicPolicyCenterConsumerWorkshop,WashingtonDC,March13,2006

2006 ConsumerInterestsintheDeliveryofGeneticServices,AmericanCollegeofMedicalGenetics,SanDiegoCA,March24,2006

2006 OrganizingGeneticAdvocacy,SarahLawrenceHealthAdvocateAnnualConferenceKeynote,NewYorkNY,March31,2006

2006 AdvocacyinChina,People’sLiberationArmyHospital,Beijing,China,August14,20062006 AResearchParticipantPerspective,AmericanSocietyofHumanGenetics,NewOrleansLA,October10,

20062006 AlliancesforAdvocacy,AssociationofChineseGeneticistsinAmerica,AmericanSocietyofHuman

Genetics,NewOrleansLA,October11,20062006 GeneticTesting:fromFamilyHistorytoComplexGeneticTesting,NewEnglandRegionalGenetics

GroupAnnualMeetingKeynote,DurhamNH,December1,20062006 RareDiseaseTrialandDrugDataDisclosureandTransparency,RareDiseaseLeadershipSummit,

WashingtonDC,December7,20062007 MakingEveryVoiceCount:PublicConsultationonGenetics,Environment,andHealth,Geneticsand

PublicPolicyCenter.WashingtonDC,January8,20072007 AccessToCredibleGeneticsResources(ATCG)Network,NationalCoalitionforHealthProfessional

EducationinGenetics(NCHPEG)AnnualMeeting,BethesdaMD,February2,20072007 ModelsforCollaborativeResearch:TheViewfromthePatient,HealthResourcesandServices

Administration(HRSA)/AmericanCollegeofMedicalGenetics(ACMG)MeetingonRareDiseasesPlenarySession,WashingtonDC,February2,2007

2007 DraftGuidanceforIndustry,ClinicalLaboratories,andFDAStaffonInVitroDiagnosticMultivariateIndexAssays,WashingtonDC,February8,2007

2007 SpecialPolicyIssues,CentersofExcellenceinELSIResearchPrincipleInvestigator’sMeetingPlenaryPresentation,WashingtonDC,February22,2007

2007 Collaboration,EducationandTestTranslation(CETT)ProjectMeetingPlenarySession,WashingtonDC,March5,2007

2007 AmericanCollegeofMedicalGeneticsAnnualMeetingPosterSession,NashvilleTN,March22,20072007 ConsumersofNewKnowledgeintheGenomic/ProteomicAge,AmericanAssociationofMedical

Colleges,WashingtonDC,April17,20072007 TheLaboratoryConnection:Patient,Providers,Policymakers,TheAmericanClinicalLaboratory

AssociationAnnualMeetingPlenarySession,WashingtonDC,April20,20072007 ModelsforCollaborativeResearch:AcceleratingTranslation,UniversityofMarylandGeneticsProgram

Lecture,CollegeParkMD,April25,20072007 IfNotaSymphony,ThenatLeastHarmony,AssociationofPublicHealthLaboratories,Newborn

ScreeningNationalMeetingKeynote,MinneapolisMN,May7,20072007 TestimonyregardingtheGeneticInformationNondiscriminationAct,EnergyandCommerce

SubcommitteeHearing,WashingtonDC,May8,20072007 GeneticTesting:FromFamilyHistorytoComplexGeneticTesting,ConnecticutStateDepartmentof

PublicHealthAnnualGenomicsMeeting,WestHartfordCT,May10,2007

16

2007 ConsumerEmpowermentandAdvocacy,SickleCellQualityCareConferencePlenaryPresentation,NewHavenCT,May11,2007

2007 IndividualizedTherapy:ConsiderthePatient,UniversityofNorthCarolinaInstituteSymposiumAddress,ChapelHillNC,May18,2007

2007 PerspectivesofPatientAdvocatesandNormalControls,InstituteofMedicineBoardofDirectorsMeeting,WashingtonDC,June7,2007

2007 SecondaryUsesofHealthData,NationalCommitteeonVitalandHealthStatisticsadhocWorkGrouponSecondaryUsesofHealthData,WashingtonDC,September2,2007

2007 EyesonthePrize:TruthTellingaboutGeneticTesting,GeneticTestingSummit,WashingtonDC,September12,2007

2007 AConsumerPerspectiveonNewbornScreening,AdvisoryCommitteeonHeritableDisordersandGeneticDiseasesinNewbornsandChildren,September18,2007

2007 ConsumerPerspectiveonPersonalizedMedicine,ForumonDrugDiscovery,Development,andTranslation,WashingtonDC,October15,2007

2007 AccesstoCredibleInformation,SocialIssuesSessionPlatform,AmericanSocietyofHumanGenetics,SanDiegoCA,October24,2007

2007 EyesonthePrizeReport,Secretary’sAdvisoryCommitteeonGenetics,HealthandSociety,WashingtonDC,December12,2007

2008 PersonalizedMedicine:TransformingHealth,President’sCouncilonScienceandTechnology,WashingtonDC,January8,2008

2008 MolecularDiagnosticsandtheChangingLandscape:FromDevelopmentthroughReimbursementConsiderationsandImplications,AdvaMedAnnualMeeting,WashingtonDC,February8,2008

2008 GeneticAllianceBioBank:EnablingTranslationalMedicine,InternationalSocietyofBiologicalandEnvironmentalRepositories,BethesdaMD,April8,2008

2008 Celebrating25yearsoftheOrphanDrugAct,FDA’sMeetingontheODA,WashingtonDC,May18,2008

2008 TransformingTranslation:FromFamilyHistorytoBiobanks,InternationalCongressonRareDisordersAnnualMeeting,WashingtonDC,May21,2008

2008 TranslationalResearch:DisruptiveConsumerInnovation,HouseofLords,UnitedKingdom,June6,20082008 RegulationofGeneticTesting,BiotechnologyIndustryOrganizationAnnualMeeting,SanDiegoCA,

June18,20082008 ModelsforTranslationalResearch,InstituteofMedicine,TranslationalMedicineRoundtable,

WashingtonDC,June23,20082008 CompanionDiagnosticsasDisruptiveInnovation,MolecularDiagnosticsAdvisoryBoardMeeting,

ChicagoIL,September4,20082008 GeneticInformationNondiscriminationAct:anoverview,NationalCoalitionofHealthProfessional

EducationinGeneticsAnnualMeeting,BethesdaMD,September4,20082008 ConsumingGenomicInformationfromtheFirehouse,GeneticsofCommonDiseaseMeeting,Broad

Institute,CambridgeMA,September8,20082008 PersonalizedMedicine:DisruptiveInnovation,BiotechnologyIndustryOrganization,WashingtonDC,

September9,20082008 HasGeneticTestingReachedaTippingPointforLabs?LabInstitute2008,WashingtonDC,September

19,20082008 InvestingINtheMoney:VenturePhilanthropy,IOMRoundtable:NeuroscienceForum,IrvineCA,

October3,20082008 WhyDiseaseAdvocacyOrganizationsmakeExcellentCuratorsofLocus-specificVariation,Human

VariomeMeeting,PhiladelphiaPA,November10,2008

17

2008 DynamicInformedConsent:anendtoworryingaboutprivacy,AssociationofClinicalResearchOrganizations,WashingtonDC,November13,2008

2008 GeneticInformationNondiscriminationAct:Onramptopersonalhealthcare,HumanHealth:MoleculestoMankindMeeting,AtlantaGA,December15,2008

2008 ConsumerPerspectiveonPersonalGenomics,PersonalGenomicsMeeting,BethesdaMD,December17,2008

2009 PruebasGenetics:LaEradelosGenomasPersonales,NatureGenetics,Madrid,Spain,January29,20092009 AccesstoInformationforPatients,ICORD,Rome,Italy,February24,20092009 Participantsatthecenter:Acceleratingthepathwayfromresearchtohealth,BeyondEureka,

DonaghueFoundationKeynote,HartfordCT,April28,20092009 PersonalizedMedicine,PlanningfortheFuture:You,BioMarkers,andYourRights;LookingBeyond

Science,AAAS/FDLI,WashingtonDC,June2,20092009 PublicPolicyandGINA,ConsumerGeneticsShow,BostonMA,June8,20092009 CommunityCenteredFamilyHealthHistory,NIHState-of-the-ScienceConsensusConference,Bethesda

MD,August24,20092009 EmpowerOne,StrengthenAll,AnnualPrader-WilliResearchFoundationConference,September13,

20092009 Landscapeanalysisofbiobanksandregistriesasatooltoenhancetranslationalresearchsystems

(Poster),59thAnnualMeetingoftheAmericanSocietyofHumanGenetics,HonoluluHI,October20-24,2009

2009 ResourceRepository:RevolutionizingAccesstoInformation(Poster),59thAnnualMeetingoftheAmericanSocietyofHumanGenetics,HonoluluHI,October20-24,2009

2009 Drugdevelopmentforrareandneglecteddiseases(Poster),59thAnnualMeetingoftheAmericanSocietyofHumanGenetics,HonoluluHI,October20-24,2009

2009 AccesstoCredibleGeneticsResources:Whatdoesthatmeanformypractice?(Poster),NationalSocietyofGeneticCounselorsAnnualEducationalConference,AtlantaGA,November12-15,2009

2009 Addressingissuesofprivacyanddiscrimination:needsofgeneticcounselors(Poster),NationalSocietyofGeneticCounselorsAnnualEducationConference,AtlantaGA,November12-15,2009

2009 TherapeuticDevelopmentforRareDiseases,IOMCommitteeonAcceleratingRareDiseaseResearchandOrphanProductDevelopment,WashingtonDC,November23,2009

2010 Diseaseadvocacyorganizationsmayaccelerateresearchthroughregistriesandbiobanks(Poster),2010ACMGAnnualClinicalGeneticsMeeting,AlbuquerqueNM,March24-28,2010

2010 Howdisease-advocacygroupsparticipateinclinicalresearch:resultsfromanationalsurveyoforganizationsforgeneticdisorders(Poster),2010ACMGAnnualClinicalGeneticsMeeting,AlbuquerqueNM,March24-28,2010

2010 NewbornScreeningClearinghouse:AccesstoRelevantInformationforAll,AmericanCollegeofMedicalGeneticsAnnualClinicalGeneticsMeeting,AlbuquerqueNM,March26,2010

2010 OpennessasProcessandProduct,SageCommonsCongress,SanFranciscoCA,April24,20102010 NewbornScreeningClearinghouse:AccesstoRelevantInformationforAll,AssociationofPublicHealth

Laboratories,OrlandoFL,May2,20102010 NewbornScreeningClearinghouse,AssociationofPublicHealthLaboratories,InformationandData

CollectionforNewbornScreening:ANationalApproach,OrlandoFL,May6,20102010 TheComingRevolutioninPrenatalGeneticTesting?Patient/Consumer/PublicPerspective,Maternal

SerumCell-freeFetalDNATesting,StanfordUniversity,StanfordCA,May7,20102010 Diseaseadvocacyorganization-initiatedbiorepositoriesandregistries–anexploratorysurvey,ISBER

2010AnnualMeeting,Rotterdam,TheNetherlands,May14,2010

18

2010 ChallengesandOpportunitiesinUsingNewbornScreeningSamplesforTranslationalResearch,InstituteofMedicine,WashingtonDC,May24,2010

2010 IncreasedCoordinationbetweenDiscoveryScienceandRegulatoryScience,NIH-FDALeadershipCouncil,WhiteOakMD,June2,2010

2010 HealthandInnovation,LaConférencedeMontréal/ForumÉconomiqueInternationalDesAmériques(preG8-G20),Montreal,Canada,June10,2010

2010 RequisitesforSuccessfulPrecompetitiveCollaborationinDrugDevelopment,InstituteofMedicine,WashingtonDC,July22,2010

2010 ShouldWeFeedbackIndividualResultstoParticipants,InternationalDataSharingConference,UniversityofOxford,OxfordUK,September22,2010

2010 IdentifiabilityintheEraofGenome-ScaleResearch:PerspectiveofParticipants,AmericanSocietyofHumanGeneticsAnnualMeeting,WashingtonDC,November3,2010

2011 TranslationalResearch,PlenaryPresentation,GeneticDiseasesinChildren,NewYorkNY,March8,2011

2011 Registries,BioBanks,ConsentandIRBs,InternationalRareDiseaseResearchConsortium,WashingtonDC,April4,2011

2011 EffectiveStrategiesforEnsuringPatientsareEqualPartnersinResearch,Fremantle,WesternAustralia,April20,2011

2011 RareandNeglectedDiseases:TheTimeisNow,GoldLab2ndSymposium,BoulderCO,May14,20112011 TheFullMonty:WhatExposingYourGenomeMeansin2011,ConsumerGeneticsShow,BostonMA,

June7,20112011 Genomics,MedicineandOrdinaryPeople,GenomeBCBoardmeeting,Vancouver,Canada,June9,

20112011 Consumers’PlaceinTranslationalResearch,TheIndusEntrepreneurs,AlexandriaVA,June14,20112011 DiagnosisandTreatment:HiTech,NovelSolutions,AshokaInternationalForum,Paris,France,June21,

20112011 EveryoneaChangemaker,KnightFoundation,WashingtonDC,June28,20112011 PublicViewsontheImportanceofDiagnosticInnovation,BiotechnologyIndustryOrganization(BIO),

WashingtonDC,June30,20112011 NewbornScreening:OfthePeopleandBythePeople,CDCGrandRounds,AtlantaGA,August18,20112011 PatientandFamilyPerspectivesinGenomicMedicine,Genetics,PrimaryCareandEmergingNations,

AmericanSocietyofHumanGenetics,Montreal,Canada,October7,20112011 TheWayForward,KeynotepresentationforGenomeCanada’sStrategicPlanning,Montreal,Canada,

October7,20112011 TreasureTroveorDNADatabase:NBSBloodspots,InternationalCongressonHumanGenetics,

Montreal,Canada,October14,20112011 NotJustaSeatattheTable:ParticipantsBuildingtheResearchAgenda,InternationalConferenceon

Patient-centricInitiatives,Rome,Italy,October28,20112011 NavigatingtheEcosystemofTranslationalScience,AshokaGlobalizer,Vienna,Austria,November7,

20112011 NotJustaSeatattheTable:PlanningtheMenu,JapanSocietyforHumanGenetics,Tokyo,Japan,

November11,20112011 FamiliesandPatientsattheCenter,UniversityofTokyo,Japan,November13,20112011 USAdvocatesinResearchandServices,NationalAcademyofSciences,Moscow,Russia,November16,

20112011 KeynoteAddress,WorldOrphanDrugCongress,Vienna,Austria,November29,2011

19

2012 Keynote,BeyondtheClinic:PersonalizedMedicineIntegratedintoPersonalHealth,PersonalizedMedicineWorldCongress,PaloAltoCA,January23,2012

2012 CitizenScience:WhatHappensWhenthePublicEngagesinScience?,AAASAnnualMeeting,Vancouver,Canada,February17,2012

2012 CreatingaTeamofTeams,RareDiseaseDayKeynote,NationalInstitutesofHealth,BethesdaMD,February29,2012

2012 EmpoweringthePublictoParticipateinTranslationalResearch,Food&DrugAdministration,SilverSpringMD,April3,2012

2012 StateoftheScienceandPatientSupportinPseudoxanthomaelasticum(PXE),NetherlandsCancerInstitute,Amsterdam,TheNetherlands,May3,2012

2012 InformingReproductiveChoice–PrenatalGeneticTestinginthe21stCentury,StanfordCenteronLawandtheBiosciencesandtheStanfordCenterforIntegrationofResearchinGeneticsandEthics,StanfordCA,May29,2012

2012 AdvocacyandBiobanking,NationalInstituteofMentalHealthAllianceMeeting,BethesdaMD,July13,2012

2012 CitizenScience,LuminarySeries,ScientiaAdvisors,BostonMA,August13,20122012 TakingResearchForward:RoleofPatientandHealthAdvocacyOrganizations,7thEuropeanElastin

Conference,UniversityofGhent,Belgium,September4,20122012 PXEInternationalWorksforYou,PXEPatientConference,Ghent,Belgium,September5,20122012 TeamofTeams,OrphanDrugDevelopment,OrphanDrugCongress,Barcelona,Spain,October17,

20122012 ClinicalDataSharingWorkshop,Chair,InstituteofMedicine,WashingtonDC,October24-25,20122012 AdvocacyandRegistriesforAll:TimeforChina?,4citytour,Shanghai,Xi’an,BeijingandHebei,

November8-16,20122012 ReclaimingHealth:PowertothePeople,NationalInstituteofMentalHealthDirector’sInnovation

SpeakersSeries,BethesdaMD,November29,20122013 DataSharing,NewEnglandJournalofMedicineEditorialBoardAnnualMeetingKeynote,BostonMA,

February8,20132013 VisionfortheFuture,InternationalPachyonychiaCongenitaConference,ParkCityUT,February13,

20132013 RegistriesforAllDiseases.RareDiseaseDay,NationalInstitutesofHealth,BethesdaMD,March1,

20132013 RegistriesforAllDiseases,BuildingNewPatient-CenteredResearchNetworks,Webinar,FasterCures,

March20,20132013 TheNextGenerationofProblemSolvers,Biovision,Lyon,France,March24,20132013 TheHaystackIsMadeofNeedles:AGlobalViewofRareDiseases.InternationalRareDiseasesResearch

Consortium,Dublin,Ireland,April16,20132013 TheHaystackIsMadeofNeedles,GeneticsEnvironmentsandTraitsConferenceofthePersonal

GenomeProject,HarvardUniversity,BostonMA,April23,20132013 RegistrySolutionforBigData,RADLab,UniversityofCaliforniaBerkeleyCA,April30,20132013 BuildingtheWe,TEDx,RosalynVA,June9,20132013 TheHaystackIsMadeofNeedles,PersonalizedMedicineWorldConference,Hertzelia,Israel,June30,

20132013 NewModelsinCitizenScience,NCIConsentForum,RockvilleMD,September4,20132013 PartnershipswithParticipants,Medicine2.0,London,UnitedKingdom,September24,20132013 WhatDoesGeneticAllianceRegistryandBioBankOffer?,ABCC6-BudapestMeeting,Budapest,

Hungary,September27,2013

20

2013 PlatformforEngagingEveryoneResponsibly,Syapse,PaloAltoCA,October7,20132013 Epidemiology,Registries,BiobanksandMore,ShandongAcademyofMedicalSciences,Shandong,

China,October16,20132013 ScienceandAdvocacy(orWithoutMudthereisNoLotus),TrinityWashingtonUniversity,Washington

DC,October30,20132013 PlatformforEngagingEveryoneResponsibly,PRIM&R,BostonMA,November6,20132013 EmpoweringanEngagedPublic,PersonalizedMedicine:Isitourfuture?,WomeninScience,Ridgefield

CT,November7,20132013 PlatformforEngagingEveryoneResponsibly(PEER),PRIM&R,BostonMA,November8,20132013 TakingControl:EthicalChallengesforParticipant-CenteredandParticipant-LedResearch,PRIM&R,

BostonMA,November8,20132013 PhenXSteeringCommitteePotentialDomainMendelianDiseases,BostonMA,November18-19,20132013 PlatformforEngagingEveryoneResponsiblyinBiomedicalResearch(PEER),InstituteofMedicine,

WashingtonDC,December4,20132013 PlatformforEngagingEveryoneResponsiblyinBiomedicalResearch,NationalHumanGenome

ResearchInstitute,BethesdaMD,December16,20132014 ParticipantEngagement:ToolstoMeetPeopleWhereTheyAre,PCORnet:CommunityEngaged

NetworkforAll(PPRN18),WashingtonDC,February21,20142014 Patients’PerspectivesonHumanParticipantEngagementinCancerResearch,NationalCancerPolicy

ForumWorkshop,InstituteofMedicine,WashingtonDC,February24,20142014 TheHumaninHumanGenome,8thWellcomeTrustGenomicDisordersConference,Cambridge,United

Kingdom,March6,20142014 ParticipantEngagement,BroadInstitute’sMedicalandPopulationGeneticsProgram,BostonMA,

March20,20142014 PlatformforEngagingEveryoneResponsibly(PEER),QualityImprovementSpecialInterestGroup

Forum,AmericanCollegeofMedicalGenetics,NashvilleTN,March25,20142014 WhyNetworkingwithPatientsandtheirAdvocatesisCriticaltoyourFutureResearchFundingorGet

YourWorkDoneCheaperandEasier,ClinicalResearchForum,Washington,DC,April10,20142014 DiscoveringClinicalTrialCohorts:ToolstoMeetPeopleWhereTheyAre,DIEXResearch,Webinar,April

11,20142014 EngagingConsumersinResearch,WebinarforNationalPartnershipforWomen&Families,April15,

20142014PatientEngagement:Isittimetomarry?,Regeneron,BridgewaterNJ,April23,20142014BuildingtheWE(orWithoutMudthereisNoLotus),PostbacPosterDay,NationalInstitutesofHealth,

WashingtonDC,May1,20142014 Participantengagement:fromLittleDatatoBigData,CharitéEntrepreneurshipSummit2014,Berlin,

Germany,May6,20142014 PlatformforEngagingEveryoneResponsibly,FDA,SilverSpringMD,May19,20142014 DynamicandGranularConsentisNeeded,PCORnet,WashingtonDC,May23,20142014 PregnancyRegistry,NationalInstituteofChildHealthandHumanDevelopment,BethesdaMD,June

30,2014.2014 TheEthicsandRegulatoryLandscape:IsaMassivePublicCampaignNeeded?,WebinarfortheNIH

Collaboratory,July17,20142014 PlatformforEngagingEveryoneResponsibly(PEER),GranularandDynamicConsent,NationalInstitutes

ofHealth,BethesdaMD,July21,20142014 CENA:CommunityEngagedNetworkforAll,WebinarforPCORnet,July24,2014

21

2014 PPRN:CommunityEngagedNetworkforAll(CENA),BoardofGovernorsMeeting,WashingtonDC,September15,2014

2014 MeetingYourEnrollmentTargets:EffectiveStrategiestoEngageResearchParticipants,Patient-CenteredOutcomesResearchInstitute,WashingtonDC,September19,2014

2014 EmpoweringthePublictoParticipateinResearch,AchievingExcellenceinClinicalResearch,OakBrookIL,September19,2014

2014 HarnessingSocialNetworkingtoEmpowerEngagement,64thAnnualMeetingoftheAmericanSocietyofHumanGenetics,SanDiegoCA,October22,2014

2014 TheRoleofDiseaseAdvocacyOrganizationsinRareDiseaseResearch,2ndAnnualInternationalRareDiseaseResearchConsortiumConference,Shenzhen,China,November7,2014.

2014 AdvancesinResearchasaResultofDiseaseAdvocacyOrganizationsintheUSA,2ndAnnualInternationalRareDiseaseResearchConsortiumConference,Shenzhen,China,November,8,2014.

2014 HealthAdvocatesasCitizenScientists,RosalindFranklinSocietyAnnualMeeting,WashingtonDC,December16,2014

2015 EngagingParticipants,NationalCenterforAdvancingTranslationalSciences,BethesdaMD,January27,2015

2015 TheRoleofParticipantsinTransformingDevelopmentofInterventions,Alzheimer’sDiseaseResearchSummit2015,BethesdaMD,February10,2015

2015 Newwaysofengagingresearchparticipantsandnovelconsentmodels,BuildingaLargeU.S.CohortforPrecisionMedicineResearch,NationalInstitutesofHealth,BethesdaMD,February11-12,2015

2015 NewWaysofEngagingResearchParticipants&NovelConsentModels,FoodandDrugAdministration,WhiteOak,MD,February26,2015

2015 Roleoftheadvocacyorganizationinrarediseaseresearch,TelethonXVIIIScientificConvention,RivadelGarda,Italy,March7,2015

2015 GeneticAlliance’sUniqueRoleasaNetwork,AmericanCollegeofMedicalGeneticsAnnualMeeting,SaltLakeCityUT,March25,2015

2015 PCORI:PatientPoweredResearchNetworks,RealWorldDataforClinicalResearch:APCORnetWorkshop,WashingtonDC,March30,2015

2015 DataforHealth,PlatformforEngagingEveryoneResponsibly,RobertWoodJohnsonFoundation(RWJF),WashingtonDC,April2,2015

2015 PCORI:PatientPoweredResearchNetworks,ClinicalResearchForum2015AnnualMeeting,WashingtonDC,April17,2015

2015 WhyPMI?,NIHWorkshop:PrecisionMedicineInitiative,BethesdaMD,April28,20152015 PrecisionMedicineandPPRNs:ParticipantPowerin2015,CenterforMedicalTechnologyPolicy,

BaltimoreMD,April30,20152015 PEER:PlatformforEngagingEveryoneResponsibly,ArthritisFoundationRegistryWorkshop:Improving

HealthOutcomesforPeoplewithArthritis,AtlantaGA,May13-14,20152015 WhatLittlecandoforBIG,BIGDATAinbiomedicine,StanfordUniversity,StanfordCA,May20,20152015 InternationalRareDiseasesResearchConsortium,Fosteringpatientinvolvementininternational

research:GettingmorepatientrepresentationattheInternationalRareDiseasesResearchConsortium(IRDIRC),MadridSpain,May28,2015

2015 PlatformforEngagingEveryoneResponsibly(PEER),GranularandDynamicConsent,2015HealthPrivacySummit,GeorgetownUniversity,WashingtonDC,June2,2015

2015 IlluminatingBottlenecksthroughExperience,IOMGaugeRxMapping,InstituteofMedicine,WashingtonDC,June23,2015

2015 EngagingResearchParticipants&NovelConsentModels,CaliforniaInitiativetoAdvancePrecisionMedicine,UniversityofCalifornia,SanFranciscoCA,June29,2015

22

2015 ParticipatoryResearch,PXEResearchMeeting,Budapest,Hungary,September7,20152015 ParticipantEngagement,EthicalAspectsofParticipant-CenteredResearchInitiatives,Foundation

Brocher&COSTCHIPME,Geneva,SwitzerlandSeptember30,20152015 ParticipantEngagement,SleepResearchNetworkAnnualMeeting,BethesdaMD,October13,20152015 EngagingPatientsasCo-DesignersinResearchCareDeliveryRe-Design,KaiserPermanente:Centerfor

Effectiveness&SafetyResearch,DenverCO,October27,20152015 PCORI:AValidatedandRecognizedApproachforCreatingPatientReportedOutcomes,EURORDIS

IndustryMeeting,BarcelonaSpain,October28,20152015 AdvocacyOrganizationsandEmergingTechnologies,SummitSponsoredbyNationalAcademyof

Sciences,Engineering,andMedicine,ChineseAcademyofSciencesandtheU.K.'sRoyalSociety,Washington,DC,December1,2015

2015 PCORnetPPRN,PCORIBoardofGovernorsMeeting,WashingtonDC,December7,2015.2016 PartnersinResearch,RareDiseaseDay,NationalInstitutesofHealth,BethesdaMD,February29,2016.2016 Participants’Expectations:SharingData,GlobalAllianceforGenomicsandHealth,Kyoto,Japan,April

3,20162016 IfYouareNotattheTable,YouareontheMenu,InternationalCongressonHumanGenetics,Kyoto,

Japan,April6,2016D. ResearchSupport($28.4M)Patient-CenteredOutcomesResearchInstitute2000-53(PI:Terry,SF)03/01/2016–02/28/2019CoordinatingCenterforNetwork,Commons,EngagementandPPRNinPCORnet.•3Years•$2.5MCoordinateandprovidetechnicalassistancetoPCORnet,specificallynetwork,engagement,commonsandpatientpoweredresearchnetworks(PPRNs).Patient-CenteredOutcomesResearchInstitute1306-04899(PI:Terry,SF)09/30/2015–09/29/2018CommunityEngagedNetworkforAll(CENA)•3Years•$1,682,000PatientPoweredResearchNetwork,PCORnet,continuingtoexpandregistriesfor11diseaseadvocacyorganizationsandconductingresearchonseveralconditions.Patient-CenteredOutcomesResearchInstitute2000-52(PI:Terry,SF)01/01/2015–09/30/2015CoordinatingCenterforPatientPoweredResearchNetworksinPCORnet.•9Months•$386,000Extension–9/30/2015–2/29/2016•5Months•$523,963CoordinateandprovidetechnicalassistancetoPCORnet,specificallynetwork,engagement,commonsandpatientpoweredresearchnetworks(PPRNs).Patient-CenteredOutcomesResearchInstituteEA-236-PXE(PI:Terry,SF)05/15/2015–4/30/2016DiscoveringWhatMattersMost•1year•$247,477Conductapseudoxanthomaelasticum(PXE)conferencetodevelopprocesswherebydiseaseadvocacyorganizationscanlearnwhatmethodsworktoelicitandprioritizeresearchquestionsfromindividualslivingwithdiseases.RobertWoodJohnsonFoundationPioneerAward71636(PI:Terry,SF)12/01/2014–11/30/2015BreakingDowntheSilosofInstitutionalControlofData:ParticipantsattheCenterTakeControl•1Year•$500,000

23

ThisgrantwillallowthePlatformtoEngageEveryoneResponsiblytobeusedbyanyorganizationorcommunityeasilyandefficiently.HHSN276201400649P(PI:Terry,SF)09/19/2014–09/18/2017•NLM/NationalInstitutesofHealthProfessionalSupportServicestoSupportGeneticsHomeReference•3years•$105,732ThiscontractprovidesthreeyearsofoutreachandmanagementofdozensofdiseaseadvocacyorganizationstoupdatethespecificdiseaseentriesinGeneticHomeReference.AmericanCollegeofMedicalGenetics(PI:Terry,SF)06/01/2012–05/31/2015Consumerengagementingeneticsandtheregionalcollaboratives•3years•$1,500,000Thisgrantprovidessupportforconsumerengagementingenetics,particularlyaroundemergingtechnologiesanddecision-making.9U36MC16509(PI:Terry,SF)09/01/2009-08/31/2018•HRSA/GeneticServicesBranchQualityAssessmentoftheNewbornScreeningSystem•9years•$3,750,000ThisgrantprovidesfiveyearsoffundingtoestablishtheNewbornScreeningClearinghouseandassociatedresourceanddatacollectiontools.CompletedIlluminaUnrestrictedGrant(PI:Terry,SF)08/01/2015–10/01/2015ApplicationofPEERtoGenomes•60days•$500,000CreateaPEERsystemforindividualswhohavebeensequenced,focusingondiagnosed(peoplewithmitochondrialdisease),earlyadopters(theIlluminaUnderstandingYourGenomeprogram),andthemoretypically‘public’(peoplewhohavedonatedbloodtotheSanDiegoBloodBank).StudytheeffectivenessofPEERinallinstances.PharmaceuticalResearchandManufacturersofAmerica(PI:Terry,SF)02/01/2015–10/01/2015EnhancingdatacollectionforPDUFAV:PatientFocusedDrugDevelopmentfortheFDA•8months•$163,000BuiltPlatformforEngagingEveryoneResponsiblyregistriesforobesityandstudiedthescienceofpatientpreferenceinpartnershipwithDCRI.CollaborationwithCenterforDeviceandRadiologicHealth.Patient-CenteredOutcomesResearchInstitute1306-04899(PI:Terry,SF)03/01/2014–09/30/2015CommunityEngagedNetworkforAll(CENA)•18months•$1,000,000PatientPoweredResearchNetwork,PCORnet,enablingregistriesfor10diseaseadvocacyorganizations,commonandrare,inwhichindividualsdeterminetheirdatasharing,privacyandaccesssettings.PharmaceuticalResearchandManufacturersofAmerica(PI:Terry,SF)10/01/2013–02/01/2014EnhancingdatacollectionforPDUFAV:PatientFocusedDrugDevelopmentfortheFDA•4months•$240,000BuiltPlatformforEngagingEveryoneResponsiblyregistriesforthreeconditions(sicklecelldisease,inflammatoryboweldisease,andidiopathicpulmonaryfibrosis)toassesstheirperspectivesonriskandbenefitindrugdevelopment.SanofiCollaborateInnovateCompetition(PI:Terry,SF)January2013RegistriesforAll•$325,000Crossplatformregistryforalldiseases,usinggamificationandgranulardatasharingandprivacypreferencetechnology.

24

HHSN276201100698(PI:Terry,SF)09/19/2011–09/18/2014•NLM/NationalInstitutesofHealthProfessionalSupportServicestoSupportGeneticsHomeReference•1year,2yearsofoptions•$149,050ThiscontractprovidedthreeyearsofoutreachandmanagementofdozensofdiseaseadvocacyorganizationstoupdatethespecificdiseaseentriesinGeneticHomeReference.NLMoptedtoextenditthetwoadditionalyears.HHSH250201000035C(PI:Terry,SF)10/01/2010–09/29/2012•HRSAFamilyHealthHistoryToolCommunity-basedDisseminationandIntegrationinHRSA-fundedHealthCenters•2years•$793,467Developedthefamilyhealthhistorytoolinsixcommunity-basedhealthcenters.R13AR060159-01(PI:Terry,SF)09/01/2010–08/31/2011•NIH/NIAMSPseudoxanthomaElasticum(PXE)ResearchMeeting•1year•$49,999Thismeetingreviewedprogressingenetics,cellularandmolecularbiology,catalyzedthecurrentresearchthroughknowledgeandtoolsofrelatedresearch,providedthefoundationforacomprehensiveresearchplan,anddeterminedbestpracticesforclinicalcareofindividualsaffectedbyPXE.3R13AR060159-01S1(PI:Terry,SF)07/15/2010–06/30/2011(Whoawardedthisgrant?)PseudoxanthomaElasticumResearch2010Conference•1year•$50,000Toaccelerateanunderstandingofthepathogenesisofpseudoxanthomaelasticum(PXE),toformaconsensusonthediagnosticcriteria,andtocreatearesearchplan.2R13HG005190-02(PI:Terry,SF)06/22/2010–06/22/2012(Whoawardedthisgrant?)ConferenceSupportforGeneticAllianceAnnualConference•2years•$140,000Researchworkshopwithinconferencetoacceleratetranslationalresearch.4U35MC16451-02(PI:Terry,SF)09/01/2009–08/31/2011•HRSA/GeneticServicesBranchTranslatingResearchintoMedicalServices•4years•$3,280,000Thisgrantprovidedtwooftheawardedfouryearsoffundingtofocusonclinicalcareconsensusguidelinesandresourcesforcongenitalconditions.GrantwasprematurelyterminatedbecauseofbudgetcutstoHRSA.2R13HG005190-02(PI:Terry,SF)07/09/2009–06/30/2011•NIH/NHGRIConferenceSupportforGeneticAlliance•2years-$240,000Thisgrantwasforconferencesupportfor“DiscoveringOpennessinHealthSystems,”the2009GeneticAllianceAnnualConference.Overthecourseofthreedays,symposia,workshops,andpaneldiscussionsfocusedoncriticalissuesintranslationalresearch.5U33MC07945-05(PI:Terry,SF)06/01/2007–05/31/2012•HRSA/GeneticServicesBranchNationalConsumerCenterforGeneticResources&Services•5years•$2,900,000Thisgrantenableddevelopmentofacentralinfrastructure,providinginformationandeducationforconsumersregardinggenetics.3U33MC07951-03(PI:Terry,SF)06/01/2007–05/31/2010•HRSA/GeneticServicesBranchScreeningforHeritableDisordersinChildren:EfficacyfromaFamily/ConsumerPerspective•3years•$750,000

25

Thisprojectascertainedissuestoinformthedevelopmentofmodelstoeducateparents,createsystemsofinformeddecision-making,andprovidedatatopolicymakerstodeterminewhattestsshouldbeoffered.3U33MC07952-03(PI:Terry,SF)06/01/2007–05/31/2010•HRSA/GeneticServicesBranchScreeningforHeritableDisordersinChildren:EfficacyfromaFamily/ConsumerPerspective•3years•$1,500,000Thisprojectusedamixedmethodanditerativestrategyofunstructuredinterviews,focusgroupsandstructuredinterviewstounderstandtheexperienceoffamiliesandprofessionalswithrespecttofalse+screensandcarrieridentificationinnewbornscreening.3U33MC00214-05-03(PI:Terry,SF)06/01/2006–05/31/2009•HRSA/GeneticServicesBranchCommunityCenteredFamilyHealthHistory•3years•$1,800,000Thisprojectcoordinatedtheeffortsofmorethan22communitiesandcreatedacustomizableguidetogatheringfamilyhealthhistory.Theresultwasadownloadable,andprintable,guidewithculturallysensitivecomponentssuchasstories,pictures,andmethods.6U10CCU525036-06(PI:Terry,SF)10/01/2005–09/30/2011•CentersforDiseaseControlandPreventionAccesstoCredibleGeneticsResourcesNetwork•6years•$4,250,000Thisprojectdefinedevidence-basedinformation,bestclinicalpracticesandcorecompetencies,usingtwoconditionsasthefocus:DuchenneBeckerMuscularDystrophyandFragileXSyndrome.Infrastructureandprocesseswereestablishedthatareusedforothersinglegenedisorders.Materialsforpatientsandproviderswereproducedandnationallydisseminatedbroadlyinmultipleforms.R13AR051859-01(PI:Terry,SF)10/01/2004–09/30/2005•NIH/NIAMSPseudoxanthomaElasticumResearchMeeting•1year•$49,999Thismeetingreviewedprogressingenetics,cellularandmolecularbiology,catalyzedthecurrentresearchthroughknowledgeandtoolsofrelatedresearch,providedthefoundationforacomprehensiveresearchplananddeterminedbestpracticesforclinicalcareofindividualsaffectedbyPXE.5U33MC00214-04-05(PI:Terry,SF)06/01/2002–05/30/2007•HRSA/GeneticServicesBranchGeneticServicesandResourcesCenter•5years•$2,000,000ThisprojectconnectedallofthemajorHHSinformationandresourcegrants,builtacentralrepository,convenedanaccessibleforum,andcreatedafamilyhistorycoalition,withfocusonunderservedandunderrepresentedcommunities.