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Developing and Launching a Research Participant Registry.

Jean C McSweeney1,2,3, Beatrice Boateng2,4,3,5, Laura James2,4,3,5

  • 1a College of Nursing.

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Community advisory boards (CABs) partnered to create a diverse research participant registry in Arkansas, successfully recruiting 4,002 individuals. This approach addresses the clinical research recruitment crisis by engaging minority populations.

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Area of Science:

  • Clinical research
  • Public health
  • Community engagement

Background:

  • Clinical research studies frequently fail to meet recruitment goals, delaying progress and findings.
  • This recruitment crisis impacts up to 48% of studies.
  • A diverse participant registry was developed in a rural state with significant healthcare disparities and minority populations.

Purpose of the Study:

  • To develop a representative, ethnically and racially diverse research participant registry.
  • To implement community involvement in registry development and promotion.
  • To address the clinical research recruitment crisis.

Main Methods:

  • Community advisory boards (CABs) partnered in all aspects of registry website development.
  • Health Belief Model constructs informed educational messages and a multimedia campaign.
  • Community events were held across Arkansas at diverse venues, guided by CABs.

Main Results:

  • 4,002 individuals registered statewide between April 2016 and September 2017.
  • The registry's demographic profile matches that of Arkansas.
  • Successful recruitment was achieved.

Conclusions:

  • Community advisory board involvement was crucial for the registry's success.
  • Utilizing multiple engagement strategies and direct community contact fostered successful recruitment.
  • This model can help overcome clinical trial recruitment challenges.