Implementation of a novel strategy to increase participation of Black and Hispanic people in parkinsonism research

IntroductionBlack and Hispanic people are underrepresented in parkinsonism research leading to critical knowledge gaps and reduced quality of care.MethodsWe developed a novel, comprehensive clinical registry in which research eligibility, interest, and participation are actively tracked for all patients at our site to reduce selection bias and streamline recruitment. We also implemented targeted approaches to reduce psychosocial and sociocultural barriers to research participation of Black and Hispanic people. We then performed a retrospective chart review to test the hypothesis that these combined strategies would be associated with racially/ethnically unbiased research recruitment. All follow-up patients with degenerative parkinsonism seen at the Bronx Veterans Affairs Medical Center over a 19-month period were included in the analysis. Primary outcome measures were the approach and acceptance rates for CANPARK, a single-center prospective observational cohort study of American military veterans with parkinsonism.ResultsDuring the study window, 197 parkinsonism patients were seen, 192 were eligible for CANPARK [ages 53-91; 96.4% male; 29.7% Hoehn and Yahr ≥4; 25.0% atypical parkinsonism], 167 (87.0% of eligible patients) were invited to participate (similar in all racial/ethnic groups), and 128 of 159 patients who made a decision whether to participate (80.5%) agreed to enroll. Acceptance rates were comparable in Black (79.4%; p = 0.92) or Hispanic (87.5%; p = 0.43) versus White (80.2%) patients.ConclusionsUsing a novel, real-time clinical registry and targeted approaches, we achieved unbiased recruitment and high participation of Black and Hispanic patients in parkinsonism research. Future studies are needed to evaluate these approaches in other clinical settings.