Real-world Site Experiences With GeneMatch: The Role of a Recruitment-related Registry in the Context of Local Site Effort to Support Alzheimer Disease Prevention Research.
Real-world Site Experiences With GeneMatch: The Role of a Recruitment-related Registry in the Context of Local Site Effort to Support Alzheimer Disease Prevention Research.
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DOI：
10.1097/wad.0000000000000425
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发表时间：
2021-04-01
影响因子：
2.1
通讯作者：
Jicha GA
中科院分区：
文献类型：
--
作者：
Bardach SH;Langbaum JB;Kebodeaux CS;Jicha GA
注册被提议作为一种新的方式来加速阿尔茨海默病预防临床试验的定向招募。然而，关于登记在加速招募和登记研究机会方面的有效性的数据有限。这份手稿探索了一个网站在GeneMatch上的经验，GeneMatch是一个用于阿尔茨海默病研究的新的遗传注册表。从GeneMatch到该网站的转介被跟踪，以了解被转介的人的人口统计数据和最终的研究登记结果。推荐人与该网站现有的征聘数据库相互参照，以便更好地了解GeneMatch在现有征聘工作中的作用。GeneMatch将86个人推荐到该网站，导致54个人进入该网站以进一步参与研究。大多数转诊患者(52/86，60.47%)以前没有与网站接触过有关研究的内容，以前有过网站接触与从事现场研究没有显著关系。GeneMatch帮助确定了参与AD预防研究的新个体。结果突出了地方一级持续努力的价值，同时也利用登记处来加强研究人员招聘。目前迫切需要作出努力，进一步制定这些和其他新的外联和参与战略。
Registries have been proposed as a novel way to accelerate targeted recruitment for Alzheimer’s disease prevention clinical trials. However, there is limited data regarding registry effectiveness at accelerating recruitment and enrollment in research opportunities. This manuscript explores one site’s experience with GeneMatch, a novel genetic registry for Alzheimer’s disease research. Referrals from GeneMatch to the site were tracked to understand the demographics of those referred and ultimate research enrollment outcomes. Referrals were cross-referenced with the site’s existing recruitment database, to better understand the role of GeneMatch in the context of existing recruitment efforts. GeneMatch referred 86 individuals to the site, resulting in 54 individuals coming into the site to pursue research involvement further. The majority of referrals (52/86, 60.47%) did not have prior contact with the site about research engagement and having prior site contact did not significantly relate to engaging in on-site research. GeneMatch helped identify new individuals for participation in AD prevention studies. Results highlight the value of continuing local site-level efforts while also taking advantage of registries to enhance research recruitment. Ongoing efforts to further develop these and other novel strategies for outreach and engagement are much needed.