To describe the baseline characteristics of a national virtual cohort of LRRK2 G2019S carriers with and without self-reported Parkinson’s disease (PD) recruited from a personal genomics company.

LRRK2 mutations are among the most common causes of genetic PD, and LRRK2 is a promising target for the development of disease-modifying therapeutics for PD.  Traditional, site-based research presents barriers to recruitment of a sufficiently sized genetic sub-population. Collaboration with a personal genomics company may broaden the reach of research, and virtual, video-based visits can reduce participation barriers, enabling recruitment and engagement of a geographically diverse cohort.

LRRK2 G2019S carriers with and without self-reported PD were recruited through a personal genomics company. This 36-month virtual, observational, single-site study is engaging and characterizing participants through annual video-based visits. Annual visits include standard patient- and clinician- reported outcome measures (modified for remote assessment) that assess motor, cognitive, psychiatric, and sleep domains.

Over 60 weeks, 335 individuals were pre-screened, and 277 individuals from 34 states enrolled in the study. Of those enrolled, 59 have self-reported PD (mean (SD) age 68.6 (8.4), 98% white, 53% female, 80% Ashkenazi Jewish, modified MDS-UPDRS part III score 22.0 (10.8), 37.3% MoCA score ≤26), and 215 do not have self-reported PD (mean (SD) age 54.0 (15.1), 96% white, 59% female, 73% Ashkenazi Jewish, modified MDS-UPDRS part III score 1.8 (4.5), 25.1% MoCA score ≤26). Of our participants, 68% are novel research participants, and 94% would participate in a clinical trial for the prevention of PD.

Enrollment of a national virtual cohort of LRRK2 carriers through a single site has been successful. VALOR-PD (NINDS P50NS108676) has rapidly recruited and characterized novel research participants interested in future clinical trial participation. The study stands to develop a virtual model of research that broadens recruitment potential, lowers barriers to participation, and engages new participants.