Objective:

To determine the association between race and attitudes towards Parkinson’s Disease (PD) research in people with PD (PwP).

Background:

Prior research shows a lack of diversity in PD research. However, it remains unclear whether attitudes towards research among underrepresented groups (URGs) or the requirements of study participation contribute to this trend.

Design/Methods:

We obtained a convenience sample of PwP at a single site as part of the FIRE-UP PD II study. Participants completed surveys, which included the Trust in Medical Researchers Scale (TIMRS) survey and the 18-item PD Research Participation Survey. Higher scores indicated a greater trust in medical researchers or a greater willingness to enroll in a hypothetical research study, respectively. A linear regression model, adjusted for education, income, and gender, assessed the effect of race on TIMRS score. Wilcoxon Rank-Sum tests evaluated differences in PD Research Participation Survey responses across racial groups.

Results:

Forty-four PwP (50% men) were analyzed, with 9 (20.5%) being Black and 35 (79.5%) White. The Black group (mean [SD]: 23.67 [5.52]) reported significantly lower trust in researchers compared to the White group (mean [SD]: 35.33 [6.26]) (β = -9.85, p < 0.01). Black participants were less willing to enroll in clinical trials requiring a daily pill (Black median = 2, White median = 3; W = 232.5, p = 0.03) or a monthly in-clinic infusion (Black median = 1, White median = 2; W = 223, p = 0.04). For the other 16 study designs, which included lumbar punctures and imaging, there were no differences between the groups (p > 0.05).

Conclusions: