An introduction to ResearchMatch.org

THE PROBLEM OF PARTICIPANT RECRUITMENT

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

DEVELOPING A SOLUTION Creating ResearchMatch.org

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

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

ResearchMatch = 3 key components

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

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.

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 . Researchers are encouraged to complete the Researcher Interest Form on the site (via the Network tab)Researcher Interest Form Researcher registration tools available

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

How does ResearchMatch actually work?

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

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

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

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

Additional information Haewon Park GU Institutional Liaison or

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