cancer clinical trials a resource guide for outreach ... · cancer clinical trials a resource guide...
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Cancer Clinical TrialsAA RReessoouurrccee GGuuiiddee ffoorr OOuuttrreeaacchh,,
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The National Cancer Institute Clinical TrialsEducation Series
Cancer Clinical Trials BooksCancer Clinical Trials: The Basic Workbook
Cancer Clinical Trials: The In-Depth Program
Cancer Clinical Trials: A Resource Guide for Outreach, Education, and Advocacy
Trainer’s Guide for Cancer Education
Cancer Clinical Trials Resources
Publications
Videos
Slide Programs
Cancer Clinical Trials: The Basics
Cancer Clinical Trials: The Way We Make Progress Against Cancer
Cancer Clinical Trials: In-Depth Information
Ordering Information
The Cancer Information Service
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Participation of Different Groups in NCI TreatmentClinical Trials2
Patient accrual for NCI-sponsored cancer treatment trials by sex and race/ethnicity2
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Percentage of estimated Unites States female population represented in NCI-sponsoredcancer treatment clinical trials: log scale (by age and race/ethnic group)2
Percentage of estimated Unites States male population represented in NCI-sponsoredcancer treatment clinical trials: log scale (by age and race/ethnic group)2
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African Americans and Clinical Trials
Background
Cancer in African Americans
African American Men:
African American Women:
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Cancer in Native Americans
American Indian/Alaska Native Men:
American Indian/Alaska Native Women:
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Clinical Trial Community Resource Sheet
Type of Trial/ Phase Protocol Institution Point of PhoneType of Cancer ID# contact number
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Guide To Finding Clinical Trial Resources
NationalCancerInstitute’s PDQ
NationalLibrary ofMedicine
Food and DrugAdministration’sCancer ClinicalTrials Directory
Local CancerCenter WebSites
Examples ofPharmaceuticalResources/Internet ClinicalTrial MatchingSites
What is it? How do I access it? What will it provide?
Database produced by NCI
Registry of approximately 1,800 active cancer clinical trials
A list of sources prepared byFDA’s Office of Special HealthIssues
Guides user to other Weblocations for institutions thatconduct or list cancer clinicaltrials
Locally produced Web sitesthat include listings for trialssponsored by NCI and somepharmaceutical companies
Good supplementaryresources for locating clinicaltrials; a cancer center maybegin participating in an NCI-sponsored trial before thecenter’s information is listed inCancerNet/PDQ
Pharmaceutical Research andManufacturers of America(PhRMA) publishes a list ofnew cancer drugs indevelopment
CenterWatch’s Clinical Trials Listing Service andEmergingMed.com list manyindustry- and Government-sponsored trials
Database produced by NIH
Registry now lists 4,000 primarily NIH-supported clinical studies on many conditions, and more will be added
All trials on PDQ are listed inthis database
Go to www.cancer.gov
Go to the clinical trials areaand follow the search directions
OR
Call 1-800-4-CANCER
Go to www.clinicaltrials.gov
Can browse by disease orsponsor or insert key words
Go to www.fda.gov/oashi/cancer/trials.html#table
Can browse by disease for different sources
Different sites can be foundthrough: • www.cancer.gov• Local institutions• Call 1-800-4-CANCER for a
center near you
Information on trials taking placeat NCI’s Clinical Center inBethesda, Maryland, is availableat http://ccr.nci.nih.gov
Some centers may also havetelephone information centers
PhRMA Go to http://www.phrma.org
Click on “New Medicines inDevelopment” and search by disease. The drugs are listed by cancer type or call 202-835-3400.CenterWatchGo to www.centerwatch.comClick on “Trial Listings”EmergingMed.comGo to http://www.emergingmed.com/
Summaries about clinicaltrials conducted by NCI-sponsored researchers, thepharmaceutical industry,and some internationalgroups
Summaries about clinicaltrials for a wide range ofconditions—most of the trials listed are sponsoredby NIH
Web addresses and telephone numbers
Information listed on theWeb sites in this directoryvaries widely
Information that varies from center to centerwww.cancer.gov
Descriptions, sites, telephone numbers, and investigator names by State
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3. Attend Conferences, Meetings, andWorkshops
Attending Local Meetings and Courses
Learning through the Internet
Attending National Meetings
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1. Get Started—Circle of Connections With Individuals
Finding Opportunities to Talk to Others
People I see occasionally and where
People I see once a month and wherePe
ople I see once a week and where
Peop
leI see every day and where
Me
1. Get Started—Circle of Connections With Groups
Groups I see occasionally
Groups I see once a month
Groups I see once a week
Groups I see every day
Me
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Organization Contact Worksheet
Contact People in CommunityExamples in My CommunityOrganization Type
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3. Prioritize—Develop a Strategy andPhilosophy for Outreach and Education
Setting Objectives
Conducting Research
Considering “Targets”
4. Use NCI Audiovisual Materials to MakePresentations
5. Distribute Materials
At Events or Meetings
Through Doctors’ Offices
Through a Booth at Health Fairs or Events for LocalResearch Institution(s)
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6. Write Articles for Local Newsletters and Web Sites
The Pros and Cons of Using Newsletters Pros
Cons
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Sample Newsletter Article 1
Clinical Trials: An ImportantPart of Our Mission
Why Clinical Trials Are Important
Cancer Treatment Trials
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Cancer Prevention Trials
Risks and Benefits
Possible Benefits
Possible Risks
How to Learn More about Clinical Trials
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Sample Newsletter Article 2
Key Facts about CancerClinical Trials
Understanding that Cancer Affects All of Us
Understanding What Clinical Trials Doto Fight Cancer
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Understanding How Few People withCancer Take Part in Clinical Trials
How to Learn More about Clinical Trials
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7. Hosting an Information Session/Community Forum—A Step-by-StepPlanning Guide
Step 1. Establish a Community Forum OrganizingCommittee If You Are Planning a Large Event
Step 2. To Focus Your Information Session, Clarify Your Goals
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Step 4. Choose an Interesting Theme With a Catchy Title
General Information on Clinical Trials
Specific Information on a Particular Trial
Community Advocacy for Clinical Trials
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Step 6. Decide on the Best Way to Inform the TargetAudience About the Event
Step 7. Obtain Educational Materials
Step 8. Arrange for a Location
Step 9. Select an Event Format
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Plan Your Community Events—A Sample Timeline
6-8 Weeks in Advanceq q
4 Weeks in Advanceq q q q q
2 Weeks in Advanceq
q q q q
1 Week in Advanceq
Day of Sessionq q q q
1 Week After Sessionq
Forming an Advocacy Coalition—A Planning GuideStep 1. Establish a Partnership Organizing Committee
Step 2. With the Group, Clarify Your Organization’s Interest in Developinga Community Partnership
Step 3. Identify Current Needs and Resources
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Step 5. Identify the Key Organizations With Which You May Be Working
Step 6. Determine What You Will Ask of Groups Who Join Your Efforts• •
• •
Step 7. Write a Letter or E-mail Inviting Organizations to a“Brainstorming” and Planning Session
Step 8. To Followup With All Participating Organizations, Provide anOutline of Your Plans
Hold a Coalition Planning MeetingRequirements for a Successful Meeting• •
•
Goal Setting
Team Building
Information Overview• • •
Brainstorming
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Education and Outreach in Action
1. Work With Mass Media—Goals, Timing, and Process
Goals•
•
•
Timing•
• •
National Institutes of Health
EMBARGOED FOR RELEASE
National Cancer Institute Hosts Lecture, “Poor Whites and Health”
WHEN: WHERE:
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Sample Press Release Format
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Sample PSA Format
30-second spotSam Donaldson on Melanoma for NCI
HI, I’M SAM DONALDSON. YOU MAY KNOW ME AS ANEWS ANCHOR, BUT I’M ALSO A MELANOMA SURVIVOR.MELANOMA – THE MOST SERIOUS TYPE OF SKINCANCER – CAN BE CURABLE IF CAUGHT AND TREATEDEARLY. SO YOU AND YOUR DOCTOR SHOULD EXAMINEYOUR SKIN REGULARLY. OFTEN, THE FIRST SIGN OFMELANOMA IS A CHANGE IN SIZE, SHAPE, COLOR ORFEEL OF AN EXISTING MOLE.
FOR MORE INFORMATION, CALL THE NATIONALCANCER INSTITUTE'S CANCER INFORMATION SERVICEAT 1-800-4-CANCER OR VISIT NCI's WEB SITE ATCANCER-DOT-GOV.
Tip
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6Ways to Work With
Hospitals, Medical Centers, and Universities
What You Can Do• •
•
Why?
Introduction
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1. Work with Researchers and Health Care Professionals
•
•
•
Tips to Find Out How You Can Help Researchers• •
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2. Serve on an Institutional Review Board (IRB)
Typical Questions Addressed by an IRB•
•
• •
•
•
•
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Ways to Conduct Community Outreach and Education q
q q
q
Ways to Work with the Mediaq q
q
Ways to Work with Hospitals, Medical Centers, and Universitiesq
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