1. Recruitment for Remote Decentralized Studies in Parkinson's Disease.
- Author
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Myers, Taylor L., Augustine, Erika F., Baloga, Elizabeth, Daeschler, Margaret, Cannon, Paul, Rowbotham, Helen, Chanoff, Eli, Jensen-Roberts, Stella, Soto, Julia, Holloway, Robert G., Marras, Connie, Tanner, Caroline M., Dorsey, E. Ray, and Schneider, Ruth B.
- Subjects
PARKINSON'S disease ,MEDICAL personnel ,CLINICAL trials ,SECONDARY education - Abstract
Background: Traditional in-person Parkinson's disease (PD) research studies are often slow to recruit and place unnecessary burden on participants. The ongoing COVID-19 pandemic has added new impetus to the development of new research models. Objective: To compare recruitment processes and outcomes of three remote decentralized observational PD studies with video visits. Methods: We examined the number of participants recruited, speed of recruitment, geographic distribution of participants, and strategies used to enhance recruitment in FIVE, a cross-sectional study of Fox Insight participants with and without PD (n = 203); VALOR-PD, a longitudinal study of 23andMe, Inc. research participants carrying the LRRK2 G2019S variant with and without PD (n = 277); and AT-HOME PD, a longitudinal study of former phase III clinical trial participants with PD (n = 226). Results: Across the three studies, 706 participants from 45 U.S. states and Canada enrolled at a mean per study rate of 4.9 participants per week over an average of 51 weeks. The cohorts were demographically homogenous with regard to race (over 95%white) and level of education (over 90%with more than a high school education). The number of participants living in primary care Health Professional Shortage Areas in each study ranged from 30.3–42.9%. Participants reported interest in future observational (98.5–99.6%) and interventional (76.1–87.6%) research studies with remote video visits. Conclusion: Recruitment of large, geographically dispersed remote cohorts from a single location is feasible. Interest in participation in future remote decentralized PD studies is high. More work is needed to identify best practices for recruitment, particularly of diverse participants. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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