Publication Highlight
Abstract Purpose of Review—Parkinson’s disease (PD), the second most common neurodegenerative disease, has a worldwide prevalence projected at 12 million by 2040. While PD has been extensively researched, our understanding of the disease is based on research studies that include mostly participants of European descent. The lack of diversity in clinical trial enrollment has limited the generalizability of scientific discoveries in the field. Here, we discuss contributors to racial and ethnic disparities in PD clinical research enrollment, summarize recently proposed and tested interventions, and propose next steps to increase equity and representation in PD research.
Abstract Objective: Even though the growing prevalence of Parkinson's disease (PD) is inclusive of ethnic and racial minority groups, these populations remain underrepresented in PD clinical research. This community-based study seeks to add to the limited knowledge on barriers and facilitators to underrepresented group (URG) enrollment in PD trials by assessing minority community members' PD and research knowledge, trust in medical researchers, and likelihood to participate in research based on various study design factors. Results: Of the 97 total workshop participants, 80 completed demographic information, with the majority female (71%) and from minority racial groups -- African American/Black (37.5%) and East/Southeast Asian (45%). Levels of trust in medical researchers were generally high and improved post-workshop. Most respondents were likely to participate in trials requiring DNA or cognitive testing, and unlikely if requiring intravenous infusion or lumbar puncture. Facilitators to trial participation included offering transportation and financial incentives, while longer study visits and study duration were barriers.
