Objective: To describe recruitment methods and lessons learned to date in the BLAAC PD study.

Background: Diversity in Parkinson’s disease (PD) research is largely lacking. The Global Parkinson’s Genetics Program (GP2) aims to change this by creating a data repository for PD genetics research that is globally relevant. GP2 launched the Black and African American Connections to Parkinson’s disease (BLAAC PD) study in 2021 to support this goal.

Method: Black and African American individuals with and without PD aged >=18 years were recruited across 12 study sites. Multimedia recruitment materials were developed and disseminated for this study. Recruitment activities were implemented both centrally and locally by each study site. For each enrolled participant, sites provided information on recruitment sources. Site-level and study wide enrollment trends over time and factors associated with enrollment were examined.

Results: As of March 2025, BLAAC PD recruited over 300 PD cases and 400 control participants. More than 90% of cases were recruited from study sites’ outpatient clinics, with the remaining identified through other sources including media advertisements (newspaper, radio, and television) and mailed letters. Among controls, 30% were recruited from the clinic, primarily care partners accompanying patients with PD to the clinic. Other recruitment venues included support groups, community-based health fairs, and educational symposia. Qualitatively, most sites recruited at a steady state with periodic increases. Specific recruitment activities, like community events, may account for these increases.

Conclusion: Data from BLAAC PD indicate that outpatient clinics remain the highest yield source for Black participants in PD genetics research. Anecdotal reports from sites indicate that challenges to case recruitment outside clinics included difficulties reaching potential participants after a referral and confirming PD diagnosis. BLAAC PD is testing strategies and collecting data that will inform understanding of optimal approaches to engaging the Black community in PD research.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/improving-recruitment-of-black-and-african-american-participants-in-parkinsons-genetics-research/