Objective: Study a cohort of African American patients with PD to understand the genetic underpinnings, phenotypes, barriers to care, and engagement preferences unique to this population. Within our health system we identified >600 patients who meet study criteria. This is one of the largest cohorts reported in the USA.

Background: Historically, most studies regarding PD have failed to recruit African Americans (1). Consequently, there is an inaccurate understanding of disease manifestations and clinical recommendations specific to this population. Also, little is known about engagement preferences regarding research, and the unique challenges that these patients face to receive specialty care (2,3). Known barriers to care such as limited transportation (3) have hindered outreach, but a more concerted study of these issues may focus efforts to effectively bridge the care gap.

Method: Recruit African Americans with PD including healthy controls to participate in a survey and blood donation. Study the success of each method of outreach in enrolling both cases and controls. Analyze survey results to screen for barriers to attaining medical care, care preferences, and phenotypic features (Table 1). Create a biobank which will merge patient samples with phenotypes and genetic data for further study. Survey data screened barriers to care including those listed in Table 1.

Results: Thus far we have enrolled 35 African American patients with PD and 12 healthy controls. Engagement data included methods of recruitment and response to each method. Out of all categories, enrollment through the patient’s personal provider was by far the most successful (Fig.1). A radio ad and an online trial finder did not yield enrollees. We suspect that the doctor-patient bond and face to face conversations play a large part in helping enroll this population. Our research and recruitment team also includes a multiethnic group including African Americans which may help represent and help address generational fears of research in general.

Conclusion: In Louisiana we serve many African Americans with PD. GoAAL-PD will contribute to a better understanding of how PD effects this population. We hope that our findings will help other studies reach a population with specific engagement preferences which may be influenced by unique stigmas. We also hope to build a biobank which may be accessed for future investigation and use of advancing genetic techniques.

Table 1

Figure 1

References: 1 -Bandres-Ciga, S. et. Al, Black and African American Connections to Parkinson’s Disease Study: Addressing Missing Diversity in Parkinson’s Disease Genetics. Movement disorders : official journal of the Movement Disorder Society, 37(7), 1559–1561.
2 -Bailey, M. et. Al, Parkinson’s Disease in African Americans: A Review of the Current Literature. Journal of Parkinson’s disease, 10(3), 831–841.
3 -Chan et. al, Disparities in access to deep brain stimulation surgery for Parkinson disease: interaction between African American race and Medicaid use. JAMA neurology, 71(3), 291–299.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/genetics-of-african-americans-louisiana-parkinsons-disease-goaal-pd/