Objective: This study aimed to investigate the facilitators and barriers to Parkinson’s disease (PD) research engagement within Black people with PD and Black healthy controls.

Background: A growing body of literature describes disparities in PD within the Black population, from PD awareness and diagnosis to management and outcomes. Compounding these disparities is inequitable access to PD trials. Only 1.7% of PD clinical trial enrollees to date have identified as Black or African American. This underrepresentation limits the generalizability and validity of research findings and creates a gap in our understanding of the disease in this population.

Method: Thirty participants (15 Black participants with PD and 15 Black healthy controls) completed a survey which included demographics, past research participation, personal/family history of PD, and questions on views toward clinical research. The survey was followed by a semi-structured interview covering (1) perceptions of PD, (2) thoughts and experience with clinical research, and (3) recommendations for engaging the Black community in PD research.

Results: Thirteen of the 15 participants with PD and all the healthy controls agreed that they would strongly consider participating in a study if their doctor recommended it, and 11 of 15 participants with PD and 12 of 15 healthy controls were interested in learning about studies they might participate in. Barriers identified included time, transportation, location, lack of awareness of PD and research opportunities, and lack of a trusting relationship with the medical research field. Facilitators to research engagement included transparency and education on PD and research opportunities, culturally congruent research team members, convenience/flexibility, compensation, and academic-community partnerships.

Conclusion: There is a significant interest in PD research participation in the Black community. Sustainable, long-term initiatives using community-partnered and -located education, relationship-building, and recruitment are possible solutions to address identified barriers and increase the representation of Black participants in PD clinical trials.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/investigating-factors-contributing-to-clinical-trial-recruitment-in-parkinsons-disease-within-the-black-community/