Objective: Increase racial diversity in Parkinson’s disease (PD) genetic research by engaging Black and African American people living with PD

Background: Advancements in understanding the biological pathways of Parkinson’s disease (PD) have largely been focused on people of European ancestry. There is a critical need to understand genetic differences across populations, including people with African ancestry. Black and African American people with PD face health disparities that may be exacerbated by the paucity of representation in Parkinson’s genetic research. PD GENEration is a research study offering clinical genetic testing, counseling and return of genetic test results at no cost to individuals with PD and aims to expand participation in the Black community to improve representation and advance health equity.

Method: The Parkinson’s Foundation partnered with Morehouse School of Medicine (MSM), a historically Black institution of medicine to 1) improve inclusion in PD GENEration, 2) prioritize PD awareness, education and resources; and 3) tailor an in-person, research advocacy training program – the Learning Institute – to understand research and lived experiences of the Black community and provide education in patient engagement.

Results: From November 2021 to March 2024, MSM enrolled 157 Black participants into PD GENEration of 364 Black participants recruited nationwide (11% genetic PD positivity rate among Black participants).  14 community education events were held, including the Learning Institute in September 2023. 33 people from the Black community participated in the Learning Institute (16 people with PD, 17 care partners) becoming research advocates that can partner with researchers developing treatments. Pre/Post measures demonstrated improvements in knowledge and attitudes towards genetics. All research advocates with PD enrolled in PD GENEration and received a toolkit to support their advocacy efforts. Media was utilized to expand reach and included 2 webinars, 5 podcasts and 6 blog/news articles.

Conclusion: Establishing partnerships with trusted sources of the Black community is critical to providing equitable access to PD education and resources, including PD GENEration. Media can be a successful engagement strategy for raising awareness. Focusing on diversity and inclusion in PD GENEration will accelerate breakthroughs towards a cure for PD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/engagement-of-the-black-and-african-american-community-in-parkinsons-genetic-research/