Objective: Recruit and characterize a Black and African American (BAA) cohort to better understand Parkinson’s disease (PD).

Background: A significant gap exists in our understanding of PD etiology across underrepresented populations, including clinical features, genetics, and pathophysiology, particularly within the BAA community [1]. In 2021, the Global Parkinson’s Genetics Program (GP2), supported by the Aligning Science Across Parkinson’s initiative and implemented by The Michael J. Fox Foundation for Parkinson’s Research, launched the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study [2]. Consistent with GP2’s mission, BLAAC PD aims to democratize PD genetic data and increase equitable research.

Method: BLAAC PD is a multi-site study in the U.S., growing from 4 active sites in 2021 to 12 sites in 2024 [Figure 1]. By 2026, BLAAC PD aims to enroll 1,000 individuals with PD and 1,000 healthy controls without a first-degree relative diagnosed with PD or other neurological disorders. Individuals 18+ years old from the BAA community are eligible for BLAAC PD. Sites prioritize in-clinic and community outreach recruitment strategies [Table 1]. Participants contribute demographics, family history, diagnosis, clinical data (diagnostic criteria, Clinical Impression of Severity Index for Parkinson’s disease), and a biospecimen sample. Smell testing was also recently added to the protocol. The National Institutes of Health centrally coordinates DNA extraction, genotyping on the NeuroBooster array, whole genome sequencing, and analysis. BLAAC PD and other GP2 cohort data are available open access through the Accelerating Medicines Partnership® PD program [3]. Travel reimbursement and $25 compensation are offered to participants.

Results: As of March 6, 2024, BLAAC PD has enrolled 519 participants, of which 37.6% are cases (n=195) and 62.4% are female (n=324) [Table 2]. Available BLAAC PD data contributed to discovery of a novel GBA1 variant observed in participants of African and African admixed ancestries [4].

Conclusion: BLAAC PD is an underrepresented cohort that contributes to a more complete picture of the biology of PD. The study design and recruitment paradigms offer important new tools for engaging the BAA community. Studies like BLAAC PD are critical for global understanding of disease and development of globally relevant therapies.

Figure 1

Table 1

Table 2

References: [1] Bandrés‐Ciga S. Black and African American connections to Parkinson’s disease Study: Addressing Missing Diversity in Parkinson’s Disease Genetics. Movement Disorders. 2022;37(7):1559-1561. doi:10.1002/mds.29042
[2] BLAAC PD Homepage. https://www.blaacpd.org/.
[3] AMP®-PD Homepage. https://amp-pd.org/.
[4] Rizig M, Bandrés‐Ciga S, Makarious MB, et al. Identification of genetic risk loci and causal insights associated with Parkinson’s disease in African and African admixed populations: a genome-wide association study. The Lancet Neurology. 2023;22(11):1015-1025. doi:10.1016/s1474-4422(23)00283-1

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