An introduction to ResearchMatch

1. An introduction to ResearchMatch.org

2. THE PROBLEM OF PARTICIPANT RECRUITMENT

3. THE STAKEHOLDERS GROUP 1 WILLING RESEARCH VOLUNTEERS ARE LOOKING FOR STUDIES GROUP 2 RESEARCHERS ARE LOOKING FOR STUDY VOLUNTEERS THEY ARE NOT CONNECTING EASILY THE PROBLEM

4. DEVELOPING A SOLUTION Creating ResearchMatch.org

5. Overview of ResearchMatch.org What is it? What is it not? A new ‘matching’ tool to help volunteers easily connect with research studies An innovative national partnership to develop a centralized web-based recruitment registry A free, complementary recruitment tool Secure & promotes volunteer choice at all levels Disease-neutral Anyone residing in the US can join! • The end-all solution to participant recruitment • A replacement for successful, existing recruitment efforts • A tool that permits ‘cold calling’ volunteers • A final product

6. Background • Funded by the Clinical & Translational Science Awards (CTSA) • NIH/NCRR • Currently, 78 institutions are part of the ResearchMatch Network • A ResearchMatch Institutional Liaison exists at every participating institution to provide local oversight and usage of tool • Collaborative project that is hosted at Vanderbilt University • Registry tool overseen by the Vanderbilt IRB • Launched volunteer registration with NIH Press Release in November 2009 • Current focus – building awareness of tool to build the registry population

7. ResearchMatch = 3 key components

8. Who is using ResearchMatch? • 3 key components: • Volunteers: Anyone of any age, ethnicity and condition can register on ResearchMatch. Parents can register children under 19. Caregivers can register those who can’t register themselves • Researchers: Any PI or Proxy (individual determined by PI to use ResearchMatch for recruitment) can use ResearchMatch. This includes research coordinators, research staff assistants, research nurses or any other key study personnel • Liaisons: Individual who manages ResearchMatch at the institution, approves access for researchers, and helps get volunteers signed up

9. Key Component #1: Volunteers • Anyone residing in the United States who may be willing to learn about research studies that might be of interest to them are welcome to join! • 5-10 minute registration process • Self • Parent/Guardian/Caretaker • Questions include: • Basic contact information (protected) • Secure username/password • Basic information (age, race, gender, height, weight, etc.) • Voluntary entry of health/medical conditions and medications • Preference page (e.g. how far are you willing to travel) • Currently, volunteers cannot search for studies in ResearchMatch.

10. Key Component #2 : Researchers • Who is authorized to use ResearchMatch? • PI or Study Coordinator with active, IRB-approved protocol at a participating institution in the ResearchMatch Network • What type of access exists? • Feasibility Access – view aggregate information for grant-writing purposes or hypothesis generation • Recruitment Access – requires IRB-approved protocol and allows researcher to: • Search the ‘anonymous’ registry for potential matches to their study • Send initial recruitment message to those potentially matching volunteers • The match occurs when volunteers authorize the release of their contact information once they review this initial recruitment message by email. • Researchers are encouraged to complete the Researcher Interest Form on the site (via the Network tab) • Researcher registration tools available

11. Key Component #3: Liaisons • Each participating site has at least 1 Institutional Liaison who is responsible for managing researcher requests from their institution through ResearchMatch • Liaison approval consists of reviewing registered information & uploaded IRB approval letter from researcher • Liaison is responsible for setting ResearchMatch access expiration date to match that of the IRB approval letter expiration date • Liaison Approval – automatically notifies researcher of recruitment access privileges • Liaison able to review recruitment messages sent by researchers affiliated with institution • Global metrics provided back to Liaison through “Liaison Dashboard” to provide real-time feedback regarding utilization level

12. How does ResearchMatch actually work?

14. Volunteer & Researcher Connection Step 1: Potential volunteers (or their parents/caretakers) self-register to indicate a willingness to be contacted for research studies. Step 2: Registered researchers search database for individuals (identifiers suppressed) based on study inclusion criteria.

15. Step 1: Researcher (PI or coordinator) registers and provides information regarding IRB-approved protocol. Step 2: Researcher can search registry with feasibility access (aggregate data) while recruitment request pending liaison review. Researcher & Liaison Connection

16. Step 4: Researcher is notified of approval via email and can begin to search registry and contact potential matches for their study. Step 3: Liaison receives access request. Approves request by setting expiration date to match IRB approval expiration. Researcher & Liaison Connection

17. Volunteer & Researcher Connection Step 3: Researchers send IRB approved recruitment message to ‘matched’ volunteers. Volunteers may then opt to share identifiable information for direct contact. Step 4: Researchers contact interested volunteers and follow normal study consent procedures.

19. Additional information www.researchmatch.org Haewon Park GU Institutional Liaison hp47@georgetown.edu 202-444-2793 or https://www.researchmatch.org/researchers/

20. Helping to shape a healthier future RESEARCHMATCH.ORG 17 FEBRUARY 2010 BETHESDA