Developing and Launching a Research Participant Registry

A major challenge in clinical research today is the difficulty that studies have in meeting recruitment goals. Up to 48% of studies do not meet accrual goals within the specified timeframe, significantly delaying the progress of projects and the dissemination of findings. This pervasive problem is a recruitment crisis. We developed a representative, ethnically and racially diverse research participant registry in a predominantly rural state with high levels of health care disparities and minority populations. We sought input at each step of development from members of community advisory boards (CABs) across Arkansas. We report how community involvement in the development of the registry was implemented.

Members of CABs were partners in developing all aspects of the registry website, including the name, content, appearance, educational messages, and testimonials used. Constructs from the Health Belief Model informed the educational messages and supported the intense multimedia campaign used to launch and promote ongoing registrations. Using CAB guidance, community events were held throughout the state of Arkansas at venues with diverse racial and ethnic attendance.

From April 1, 2016 to September 1, 2017, 4,002 people registered statewide who match the demographic profile of Arkansas.

CAB involvement in the registry, multiple cues to action, and face-to-face contact with diverse lay audiences throughout the state were key components of the successful registry launch.