JMIR Publications

ABSTRACT

Background:

Parkinson’s disease (PD) has been described and studied extensively in White populations, with little known about how the disease manifests and progresses in patients from the Black community. Studies investigating disease features in Black populations are uncommon, with some suggesting that Blacks with PD are more disabled and have greater disease severity and different clinical features compared to White PD patients. These health disparities are likely to influence the quality of care for Black PD patients.

Objective:

This study aims to investigate the motor and non-motor symptoms and quality of life in Black and White PD participants in a case-case design.

Methods:

This is an observational, prospective, multi-center, case-case design study. Other aims will investigate the management of Black patients with PD and the presence of shared or unique genetic risk factors among the Black PD population. Four hundred Black PD and 200 White PD participants will be recruited. Data will be collected at 7 US sites and entered into a REDCap database. Linear multivariate regression analysis will be used, except for comparing PD management, which will be analyzed using the Chi-square test or Fisher’s exact test. Bonferroni correction will be applied. This protocol also describes plans for educational programming for clinicians and patients at the end of the study in partnership with national PD organizations.

Results:

The Rush Institutional Review Board approved the project as the single-site IRB in February 2022 and funded by NINDS in April 2022. Recruitment began in July 2022. At the time of submission of this manuscript, 131 participants had been recruited.

Conclusions:

To our knowledge, this is the largest study of PD phenotype and management in Black patients in the US. The planned collaboration with the Global Parkinson’s Genetics Program and PD GENEration will enhance our understanding of genetic risk factors for PD in this understudied population.