Objective: To compare a national virtual cohort of LRRK2 G2019S carriers, identified via a personal genetics company, to existing traditional cohorts.

Background: Advancements in personal genomics have identified novel populations with increased risk for diseases, but engagement of these populations in clinical research is limited by geography and restricted to in-clinic visits. Virtual visits may reduce participation barriers, enabling recruitment and engagement of a geographically diverse cohort prepared for future clinical trials.

Method: We aim to enroll roughly 300 LRRK2 G2019S carriers (250 without PD, 50 with PD) in this 36‐month virtual, prospective, observational, single-site study. Participants complete annual virtual visits, which include standard patient- and clinician-reported outcome measures (modified for remote assessment) that assess motor, cognitive, psychiatric, and sleep domains.

Results: As of 2/27/20, 183 individuals (42 with PD, 141 without PD) from 30 states have enrolled. Our virtual cohort of LRRK2 carriers without PD (mean (SD) age 55.9 (14.6), 98% white, 59% female), is largely similar in demographics to traditional cohorts including the Parkinson’s Progression Markers Initiative (mean (SD) age 61.6 (7.6), 93% white, 58% female)[1] and the LRRK2 Cohort Consortium (mean (SD) age 51.9 (15.6), 82% white, 58% female)[2]. 68% of the LRRK2 carriers without PD are novel research participants, and 90% would participate in a clinical trial for the prevention of PD.

Conclusion: Recruitment of a national virtual cohort of LRRK2 carriers through a single site has been successful. VALOR-PD (NINDS P50NS108676) has engaged new research participants interested in future clinical trials. The study stands to develop a new virtual model of research that lowers barriers to participation and engages new participants.

References: [1] Simuni T, Uribe L, Cho HR, et al. Clinical and dopamine transporter imaging characteristics of non-manifest LRRK2 and GBA mutation carriers in the Parkinson’s Progression Markers Initiative (PPMI): a cross-sectional study. Lancet Neurol2019 2019/11/05. DOI: 10.1016/S1474-4422(19)30319-9. [2] Pont-Sunyer C, Tolosa E, Caspell-Garcia C, et al. The prodromal phase of leucine-rich repeat kinase 2-associated Parkinson disease: Clinical and imaging Studies. Mov Disord2017; 32: 726-738. 2017/04/04. DOI: 10.1002/mds.26964.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/virtual-assessment-of-lrrk2-carriers-to-optimize-research-in-parkinson-disease-valor-pd-a-comparison-to-traditional-cohorts/