Objective: To explore the underlying motivation behind participation in PREDICT-PD and whether this had an influence on later drop out from the study.

Background: The PREDICT-PD project aims to identify a group ‘at higher risk’ of Parkinson’s disease (PD). Better understanding of why subjects participated is important when considering wider use as a risk-stratification tool.

Methods: Subjects recruited at baseline were invited to provide feedback related to their reasons for taking part and how they had heard about the study. The baseline demographics of those that gave feedback were compared with those that did not, to determine any differences. The reason for participation could be divided broadly into two groups: those who had friends, a spouse or family affected by PD and those with no personal connection to PD. Feedback was used to determine whether comments at baseline influenced continued participation in the study.

Results: Feedback was provided by 774 of the 1323 participants (58.5%) that completed the PREDICT PD survey at baseline. There were no statistically significant differences in gender, family history of PD, or smoking and alcohol use between those that provided feedback and those that did not. There was a small but statistically significant difference in the age of those that provided feedback compared with those that did not (67.5 vs 66.7 years; p=0.003). Of the responders, 62.8% had a personal link to PD and the remaining 37.2% were altruistic. Using 3-year follow-up data, there was evidence that those who provided feedback were more likely to remain in the study compared to those that did not (69% vs 56%; p<0.001). The reason for taking part did not influence participation at follow-up (63% with a personal link to PD and 64% of those motivated by altruism participated in year 3). Participants learned of the study either by direct email from Parkinson’s UK (35%), via friends/family members (47%), or through other media such as newspaper and radio (6.5%).

Conclusions: The majority of participants had a personal reason to participate in PREDICT-PD, but approximately one third had no direct connection with PD. Given the online nature of PREDICT-PD it is unsurprising that most participants learned of the study via email directly from Parkinson’s UK or by email/word of mouth from friends and family. This study suggests that recruitment of a large, unbiased group from the general population would be feasible. Reference: 1) Noyce et al. JNNP 2013.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/participant-feedback-in-the-predict-pd-study/