Recruitment for Remote Decentralized Studies in Parkinson’s Disease

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.

Recruitment and Retention in Remote Research: Learnings From a Large, Decentralized Real-world Study

“…Typically, decentralized studies recruit from various web-based sources such as social media (Facebook [ 26 ] and Reddit [ 27 ]), crowdsourced platforms (Prolific [ 28 ]; Amazon Mechanical Turk, MTurk [ 29 ]; Centiment [ 30 ]; and CloudResearch [ 31 ]), and partnerships with patient registries or advocacy groups [ 32 , 33 ]. Although these recruitment channels have shown the potential to reach and recruit large populations remotely [ 34 - 36 ], the long-term and uniform retention of remote participants has been challenging. Recent findings show that retention rates vary from 1% to 50% [ 24 ], with monetary incentives being able to significantly improve long-term retention [ 10 ].…”

Parkinson's disease and Covid-19: The effect and use of telemedicine

“…In relation to delivery of treatment, and more generally to research delivery, Myers and colleagues have recently shown that recruitment of large, geographically dispersed remote cohorts from a single location was feasible, with an average study recruitment of 4.9 participants per week over 1 year across three large PD studies ( Myers et al, 2021 ). An example of remote delivery is the “ParkinDANCE” program, where researchers adapted the in-person visits to online delivery during the Covid-19 pandemic and participants completed eight 1 h sessions of online therapeutic dancing.…”

Moving Forward from the COVID-19 Pandemic: Needed Changes in Movement Disorders Care and Research

“…During the pandemic, remote observational studies of LRRK2 carriers and PD clinical trial participants continued without interruption [74,75]. These studies utilized a small team of coordinators and investigators to enroll and characterize participants from across the USA, irrespective of their proximity to specialized research centers, by using video visits and common outcome measures [76]. Such video visits are well-liked by participants, offering comfort and convenience, as they eliminate the need for travel and reduce the burden on participants [77].…”

“…Without adequate representation, we cannot fully understand disease [93•] or the safety and efficacy of treatments [94]. Black and Hispanic individuals are under-represented in PD clinical trials [95] and recent PD decentralized studies have failed to recruit representative samples [76]. While decentralized studies reduce transportation-related barriers to participation, they may impose new barriers to research participation.…”

“…Strategies may include partnering with trusted community organizations and advocates, providing study materials in languages other than English, ensuring a diverse research team [68], providing training on inclusive research practices [93•], educating community providers on research opportunities [96], and providing the technology required for participation. We cannot assume that recruitment strategies designed for traditional in-person studies will translate to decentralized studies [76]. Future work should focus on the development of strategies to enhance diversity and inclusion within decentralized research studies.…”