Participants

Individuals aged 18 and over and English-literate were eligible to enroll in FI. Participants were informed that the study aimed to improve understanding of PD, such as its impact on health and quality of life over time and possible connections between family neurological history, general health, environmental risk factors, and PD. Participants affirmed an online statement of informed consent prior to the initiation of any study procedures. FI maintains the full approval of the New England IRB. Since 7/30/14 (first registration in pilot phase), approximately 42,000 individuals have enrolled.

Participants who self-reported a PD diagnosis from a healthcare provider were identified as participants with PD (PWP). In a subset of individuals, the PD diagnosis was confirmed via telehealth consultation with a movement disorders specialist. The rate of diagnostic agreement (between self-report and expert consultation) was high (kappa = 0.85; 95% CI–0.76–0.94) (Schneider RB, Myers TL, Daeschler M, Tarolli C, Adams J, Barbano R, Riley L, Amondikar N, Auinger P, Diaz M, Dorsey ER, Marras C, Tanner C, Validation of Fox Insight cohort via virtual research visits). PWP were the largest cohort in this observational design and the target audience for the digital marketing campaigns described below, though FI additionally enrolls healthy controls, caregivers and those who may be at increased PD risk (e.g., REM Behavior Disorder; Hyposmia; known PD genetic mutation), compared to the general population.