an introduction to researchmatch.org. the problem of participant recruitment

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An introduction to ResearchMatch.org An introduction to ResearchMatch.org

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Page 1: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

An introduction to ResearchMatch.orgAn introduction to ResearchMatch.org

Page 2: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

THE PROBLEM OF PARTICIPANT RECRUITMENT

Page 3: 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

Page 4: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

DEVELOPING A SOLUTION Creating ResearchMatch.org

Page 5: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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

Page 6: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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

Page 7: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

ResearchMatch = 3 key components

Page 8: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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

Page 9: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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 processSelfParent/Guardian/Caretaker

Questions include:Basic contact information (protected)Secure username/passwordBasic information (age, race, gender, height, weight, etc.)Voluntary entry of health/medical conditions and medicationsPreference page (e.g. how far are you willing to travel)

Currently, volunteers cannot search for studies in ResearchMatch.

Page 10: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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

Page 11: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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

Page 12: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

How does ResearchMatch actually work?

Page 13: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT
Page 14: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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.

Page 15: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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.

Page 16: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

Researcher & Liaison Connection

Step 4: Step 4: Researcher is notified of approval via email 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.

Page 17: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

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.

Page 18: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT
Page 19: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

Additional information

Haewon Park

GU Institutional Liaison

[email protected]

202-444-2793

or

https://www.researchmatch.org/researchers/

www.researchmatch.org

Page 20: An introduction to ResearchMatch.org. THE PROBLEM OF PARTICIPANT RECRUITMENT

RESEARCHMATCH.ORG

17 FEBRUARY 2010BETHESDA

Helping to shape a healthierhealthier future