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.

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.