Abstract Details

Title Differences in Attitudes Towards Parkinson’s Disease Research by Race

Topic Movement Disorders

Presentation(s) P9 - Poster Session 9 (5:00 PM-6:00 PM)

Poster/Presentation
Number 16-003

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

Despite having higher levels of mistrust, Black participants were as willing as White participants to enroll in most hypothetical PD studies. Further research is needed to qualitatively explore URG hesitancy towards studies involving medications and to develop interventions that improve trust.

Authors/Disclosures
Theodore Kapogiannis PRESENTER	Mr. Kapogiannis has nothing to disclose.
Nabila Dahodwala, MD, FAAN (Parkinson's disease and Movement Disorders Center)	Dr. Dahodwala has received personal compensation in the range of $0-$499 for serving as a Consultant for Genetech. Dr. Dahodwala has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Mediflix. Dr. Dahodwala has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Acadia. Dr. Dahodwala has received personal compensation in the range of $5,000-$9,999 for serving as an Expert Witness for Post and Schell. Dr. Dahodwala has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for O'Brien & Ryan, LLP. Dr. Dahodwala has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for MotleyRice. The institution of Dr. Dahodwala has received research support from AbbVie. The institution of Dr. Dahodwala has received research support from Medtronic.

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