TY  - JOUR
AU  - Hall, Deborah A
AU  - Shulman, Josh M
AU  - Singleton, Andrew
AU  - Bandres Ciga, Sara
AU  - S Tosin, Michelle Hyczy
AU  - Ouyang, Bichun
AU  - Shulman, Lisa
PY  - 2025
DA  - 2025/4/7
TI  - Racial Disparities in Parkinson Disease Clinical Phenotype, Management, and Genetics: Protocol for a Prospective Observational Study
JO  - JMIR Res Protoc
SP  - e60587
VL  - 14
KW  - Parkinson disease
KW  - racial disparities
KW  - clinical protocol
KW  - health disparities
KW  - genetic risk factors
KW  - quality of life
KW  - quality of care
AB  - Background: Parkinson 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 the Black population with PD is more disabled and has greater disease severity and different clinical features compared with the White population with PD. These health disparities are likely to influence the quality of care for Black patients with PD. Objective: This study aimed to investigate the motor and nonmotor symptoms and quality of life in Black and White participants with PD in a case-case design. Methods: This is an observational, prospective, multicenter, case-case design study. Other aims will investigate the management of PD in Black individuals and the presence of shared or unique genetic risk factors among the Black PD population. A total of 400 Black and 200 White participants with PD will be recruited. Data will be collected at 7 US sites and entered into a Research Electronic Data Capture database. Linear multivariate regression analysis will be used, except for comparing PD management, which will be analyzed using the chi-square test or Fisher 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 institutional review board in February 2022, and it was funded by the National Institute of Neurological Disorders and Stroke 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 United States. 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. International Registered Report Identifier (IRRID): DERR1-10.2196/60587 
SN  - 1929-0748
UR  - https://www.researchprotocols.org/2025/1/e60587
UR  - https://doi.org/10.2196/60587
DO  - 10.2196/60587
ID  - info:doi/10.2196/60587
ER  -