Recruitment for Remote Decentralized Studies in Parkinson's Disease.

Recruitment for Remote Decentralized Studies in Parkinson's Disease.
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DOI:
10.3233/jpd-212935
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发表时间:
2022
期刊:
Journal of Parkinson's disease
影响因子:
--
通讯作者:
Schneider RB
Schneider RB
中科院分区:
其他
文献类型:
--
作者:
Myers TL;Augustine EF;Baloga E;Daeschler M;Cannon P;Rowbotham H;Chanoff E;23andMe Research Team;Jensen-Roberts S;Soto J;Holloway RG;Marras C;Tanner CM;Dorsey ER;Schneider RB

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传统的面对面帕金森病(PD)研究通常招募缓慢,并给参与者带来不必要的负担。持续的COVID-19疫情为新研究模式的发展增添了新的动力。比较3项远程分散观察性PD研究(视频访视)的招募过程和结局。我们检查了招募的参与者数量,招募速度,参与者的地理分布,以及用于增强招募的策略,FIVE是一项对Fox Insight参与者进行的横断面研究,有和没有PD(n = 203); VALOR-PD是23andMe,Inc.  携带LRRK 2 G2019 S变异体的研究参与者(n = 277)和携带LRRK 2 G2019 S变异体的研究参与者(n = 277);以及AT-HOME PD,一项针对既往III期临床试验参与者的PD纵向研究(n = 226)。    在这三项研究中,来自美国45个州和加拿大的706名参与者以平均每周4.9名参与者的平均研究率参加了51周的研究。这些队列在种族(95%以上为白人)和教育水平(90%以上为高中以上教育程度)方面具有人口统计学上的同质性。在每项研究中,居住在初级保健卫生专业人员短缺地区的参与者人数从30.3%到42.9%不等。参与者报告对未来的观察性(98.5-99.6%)和干预性(76.1-87.6%)研究(远程视频访视)感兴趣。从一个地点招募大量的、地理上分散的偏远群体是可行的。参与未来远程分散PD研究的兴趣很高。需要开展更多的工作,以确定征聘的最佳做法,特别是征聘不同参与者的最佳做法。
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. To compare recruitment processes and outcomes of three remote decentralized observational PD studies with video visits. 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). 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. 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.