Factors Affecting Minority Enrollment in Parkinson's Disease Genetic Testing
Sarah Marmol1, Matthew Feldman2, Lucila Hernandez3, Silvia Vargas3, Claudia Cano3, Danielle Shpiner4, Corneliu Luca1, Ihtsham Haq4, Henry Moore5, Carlos Singer1, Jason Margolesky6
1University of Miami, 2Movement Disorders Fellowship - University of Miami, 3University of Miami Department of Neurology, 4University of Miami Miller School of Medicine, 5University of Miami - Miller School of Medicine, 6University of Miami School of Medicine
Objective:

To investigate the rate of minorities declining participation in the Parkinson’s Foundation genetic study, PD GENEration, and assessed their racial, ethnic, and gender construct as well as their reasons for declining.

Background:
A systematic review revealed implicit racial bias among healthcare providers affecting patient-provider interactions, treatment decisions, and health outcomes. Such disparities exist in diagnosis, treatment, and research participation for Parkinson’s disease (PD). Minority and female representation in PD clinical trials is less than their population prevalence. 
Design/Methods:
Between January 2021 and October 2023, 503 patients from our clinic were screened for enrollment in PD GENEration.  
Results:

503 patients were screened, 36% of which were female, 46% were Hispanic. 380 enrolled and 123 declined to participate. 21% of females, 27% of males, 16% of Hispanic patients, and 32% of non-Hispanic patients who were screened declined. 

Of 380 who enrolled, 51% were Hispanic, 38% female; mean age was 67.78 years (±11.27), and 35% had PD family history.   

Of 123 who declined, 30% were female, mean age 70 years (±10.85); 51% were Hispanic, 48% non-Hispanic, 1% unknown ethnicity; 90% white, 8% black, 1% unknown race. Hispanic patients were 3.4, 3.2, and 2.1 times as likely as non-Hispanic patients to list poor health status, insufficient technological knowledge/resources, or poor timing as reasons for declining participation, respectively.  

Females were 6.89 times more likely than males to report lack of study awareness, while males were 2.3 and 5.2 times more likely to list poor health status or poor timing as reasons for declining, respectively.  

Conclusions:
With a focus on diverse enrollment, a majority of our enrollees are underrepresented in PD research. Though fewer Hispanic patients declined participation than non-Hispanic patients, reasons for declining differed, warranting further study to investigate and address these inequalities. Diversity in genetic study enrollment will theoretically translate into management considerations more reflective of multicultural populations.   
10.1212/WNL.0000000000204599