Despite interest in Parkinson’s research, Black community faces barriers to recruitment

Key takeaways:

• Study included 15 Black individuals with Parkinson’s disease and 15 healthy Black controls.
• More than 75% interested in study participation, and 93% would participate if doctor recommended it.

CHICAGO — While there is significant interest in the Black community to learn about Parkinson’s disease research and study participation, interventions are needed to reduce recruitment barriers and improve access to information.

“What we do know is that Black participants are significantly underrepresented in Parkinson’s disease research,” Jennifer Adrissi, MD, MS, a movement disorders neurologist at the David Geffen School of Medicine at the University of California, Los Angeles, told Healio at the International Association of Parkinsonism and Related Disorders World Congress. “So, what are the factors that contribute to this underrepresentation in order to start trying to move the dial toward equity?”

Adrissi and colleagues examined barriers to PD research and clinical trial engagement in the Black community, as previous research has shown just 1.7% of those identifying as Black participate in PD studies.

Researchers recruited 15 Black individuals with PD and 15 healthy Black controls, with assistance from the Chicago Movement Coalition Advisory Council, who participated in semi-structured interviews via Zoom or at the Northwestern Parkinson’s Disease and Movement Disorder Center or a local, predominantly Black senior living center. Participants also completed an anonymous survey of questions about demographics, PD and clinical research history and feelings about research.

The in-person interview covered knowledge of and exposure to PD; clinical research awareness, perception and experience; and recommendations for engaging the Black community in research. Interview results were divided into three categories: practical factors, personal and cultural barriers, and future recommendations for PD researchers.

According to results, nine participants (30%) had previous clinical experience, 77% were interested in learning about participating in studies and 93% would consider study participation upon recommendation from a physician.

Although most participants were interested in studies involving surveys or exercise, fewer were interested if the trials involved genetics or giving blood (73%) or drugs (26%). In addition, 87% of respondents understood that study participation is free and that they may receive compensation, but just 57% knew that costs associated with participation, such as travel, are paid for or reimbursed.

Further, people with PD stated they were more likely to be motivated to participate in research by PD-related outcomes, while healthy controls noted convenience, compensation and greater diversity were motivating factors. Patients with PD also were more likely to name health care professionals as information sources for PD, unlike healthy controls who named media and celebrities.

“Black people are interested in Parkinson’s disease and research, but there’s a disconnect between Parkinson’s disease and the Black community,” Adrissi said. “It’s often thought of as an old, white man’s disease. That leads to disparities in diagnosis, and that funnels down to clinical trial recruitment.”