Objective: To implement and test a multidimensional strategy for increasing racial and ethnic diversity in parkinsonism research.

Background: Diversity in research participation is critical for understanding risk factors, early symptoms, and treatments in patients from different backgrounds. Black and Hispanic patients are underrepresented in parkinsonism research for reasons that include reduced access to care, low approach rates, and cultural barriers. For this reason, a combined approach is needed to facilitate participation of Black and Hispanic patients in parkinsonism research.

Method: We performed an observational cohort study of parkinsonism related to traumatic brain injury. Subjects were recruited from the Bronx Veterans Affairs (VA) Medical Center movement disorders clinic. The VA provides equal access to care for all US military veterans regardless of socioeconomic status. To eliminate potential recruitment bias, we systematically prescreened all charts and approached every eligible patient seen over a 15-month period beginning in December 2022. Patients were excluded if they had a confounding medical condition or neuroleptic use within the past six months. Transportation issues were addressed by scheduling research and clinical visits on the same day, offering telehealth research appointments, and providing transportation assistance when needed. Cultural barriers to participation were minimized by including racial and ethnically diverse, bilingual research staff.

Results: A total of 251 patients [21% Black (B), 17% Hispanic/Latino (H), 58% White (W); 97% male] with degenerative parkinsonism were seen during the study time frame, of whom 243 were eligible to participate. The approach rate was 86.7% (n=155) and similar amongst all racial/ethnic groups. The acceptance rate was 86.7% (n=30) in Black, 85.2% (n=27) in Hispanic/Latino, and 81.7% (n=82) in White patients. This cohort was used to rapidly identify patients eligible for other studies, enabling us to enroll 78.7% [56.7% (n=17) B, 48.1% (n=13) H, 35.3% (n=29) W] of these subjects into a parkinsonism genetics study in an 8-month period.

Conclusion: With a targeted approach to recruitment, we were able to achieve high research participation rates in Black and Hispanic patients with parkinsonism. These strategies can increase diversity in future studies and improve our understanding of parkinsonism in underrepresented groups.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/comprehensive-strategy-for-increasing-clinical-research-participation-of-black-and-hispanic-patients-with-parkinsonism/