To assess attitudes regarding screening for disease risk among current or former participants in PPMI  

Interest in conducting clinical trials in persons who may be at risk of developing PD is increasing. Few studies have addressed attitudes regarding risk profile identification and medical research in PD, information important for the design and conduct of future studies.

An online questionnaire assessing attitudes towards pre-diagnostic screening and research participation was administered to a subgroup of individuals with and without PD, currently or previously enrolled in PPMI.

452/523 (86%) invited participants responded (36% PD, 64% without PD). Mean age was 66 (range: 27-90). 51% were female. 95% completed education after high school. 59% had family history of PD.

90% of people with PD and 94% without PD reported they would participate in PD research even without personal benefit. Barriers to research participation were distance to research center (56% PD, 48% without PD), time (21% PD, 34% without PD) and effort (20% PD, 26% without PD). Concerns about privacy of health information were voiced by 40% of participants <age 40, but only 5% > age 80.

Most expressed interest in testing for genetic and non-genetic PD risk profiles (89% PD, 87% without PD; 95% PD, 98% without PD, respectively). 50% were unsure of genetic testing availability (40% PD, 55% without PD). 6% expressed concerns about genetic testing (e.g., privacy, loss of insurance), but only 1% expressed concerns about non-genetic risk profile research.

Interest in genetic and particularly non-genetic risk profile research was high in these motivated research study participants. Participants with PD expressed greater knowledge of research opportunities and genetic testing availability. Barriers to participation were identified by more than half, highlighting the need to reduce barriers when planning trials.