Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment
Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment
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DOI：
10.3233/jad-180069
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发表时间：
2018-01-01
影响因子：
4
通讯作者：
Pierce, Aimee
中科院分区：
文献类型：
--
作者：
Grill, Joshua D.;Hoang, Dan;Pierce, Aimee
潜在参与者登记是解决临床研究招募缓慢的挑战的工具。特别是，注册可以帮助招募阿尔茨海默病（AD）的二级预防临床试验，招募符合特定遗传或生物标志物标准的认知正常的老年人。登记册有效性的证据很少，关于最佳设计或行为方法的指导也是如此。我们报告我们的经验，开发一个新的本地潜在的参与者注册，实现在线注册和数据收集。在运行的第一年，957人向登记处提交了电子邮件地址，其中592人自我报告了人口统计学，家族史和医疗数据。此外，登记者还提供了与他们对研究的兴趣和意愿有关的信息。当地赚取的媒体和社区教育是最有效的招募登记册的方法。在298名登记者中，有76名（26%）在第一年就研究进行了联系。129名注册者被邀请参加临床前AD试验，其中25名（18%）接受筛选，6名接受随机分组。这些结果表明，登记研究可以帮助招募，并为启动新的当地登记研究的研究者提供所需的指导。
Potential participant registries are tools to address the challenge of slow recruitment to clinical research. In particular, registries may aid recruitment to secondary prevention clinical trials for Alzheimer's disease (AD), which enroll cognitively normal older individuals meeting specific genetic or biomarker criteria. Evidence of registry effectiveness is sparse, as is guidance on optimal designs or methods of conduct. We report our experiences of developing a novel local potential participant registry that implemented online enrollment and data collection. In the first year of operation, 957 individuals submitted email addresses to the registry, of whom 592 self-reported demographic, family history, and medical data. In addition, registrants provided information related to their interest and willingness to be contacted about studies. Local earned media and community education were the most effective methods of recruitment into the registry. Seventy-six (26%) of 298 registrants contacted about studies in the first year enrolled in those studies. One hundred twenty-nine registrants were invited to enroll in a preclinical AD trial, of whom 25 (18%) screened and 6 were randomized. These results indicate that registries can aid recruitment and provide needed guidance for investigators initiating new local registries.