Optimizing Research Infrastructure of Registries to Accelerate Participant Recruitment into Alzheimer's Focused Studies

项目摘要/摘要 阿尔茨海默病(AD)造成的痛苦是我们这个时代最大的医学挑战之一。 随着紧迫感的增强，许多AD预防试验正在启动，需要 将对数量空前的健康老年人进行筛查，以确定数千名有资格参与的人。 与此同时，在受影响的个人及其护理伙伴中进行试验的数量继续上升。2019年， 治疗阿尔茨海默病的试验有156项，比2018年有所增加。值得注意的是，这个数字不包括 观察性研究，这对了解AD和开发新的治疗干预措施也很重要 或者阻止它。改进参与者征聘方法已成为外地的一项重要优先事项。计划 例如应对AD的国家计划呼吁更多地关注增加临床试验的登记 和其他临床研究。国家计划的一个副产品是国家招聘和发展战略 参与阿尔茨海默病临床研究，列举了四个目标，其中一个重点是 特别是需要“建立和改进登记处的研究基础设施，以便招聘和留住 越来越多的合格研究参与者。这项提议的目标是开发、部署、 优化和自动化新网站设计/内容、基础架构和功能，以支持和维持 对有兴趣参与以AD为重点的研究的成年人的在线招聘、参与和保留， 为研究人员创造可持续和持久的资源。为了实现这一目标，我们将在我们的 成功的阿尔茨海默氏症预防注册(APR)，这是一个于2012年与&gt；350,000推出的在线注册 会员，包括通过以下目标于2015年启动的GeneMatch(GM)计划的约90,000名注册成员： 1)为招聘开发、部署、优化和自动化更新和可持续的网站平台 成员加入APR及其全球机制计划并参与其中；2)开发、部署、优化和自动化 更新网站平台，支持研究人员努力招募APR和全球机制成员；以及3)开发， 部署、优化和自动化将APR和GM成员推荐给AD的新功能和流程- 重点研究。我们假设a)更新的网站将增加参加APR和GM的人数 以及成员的参与度和留存度；b)增强AD-研究员的经验将增加 利用APR/全球机制满足其参与者招聘需求的研究人员/研究赞助商的数量， 使他们能够更快地完成注册；以及c)新功能将增加APR和 通用汽车成员筛选并参加以AD为重点的研究。

Project Summary/Abstract The suffering caused by Alzheimer's disease (AD) is one of the greatest medical challenges of our time. With a heightened sense of urgency, numerous AD prevention trials are being launched, requiring an unprecedented number of healthy older adults to be screened to identify the thousands eligible to participate. At the same time, the number of trials in affected individuals and their care partners continues to rise. In 2019, there were 156 trials for the treatment of AD, an increase from 2018. Notably, this number does not include observational studies, which are also important to understanding AD and developing new interventions to treat or prevent it. Improving participant recruitment methods has become a critical priority for the field. Initiatives such as the National Plan to Address AD call for greater attention to increasing enrollment into clinical trials and other clinical research. An outgrowth of the National Plan is the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research which enumerated four goals, one of which is focused specifically on the need to “build and improve research infrastructure of registries in order to recruit and retain more and more diverse qualified study participants.” The objective of this proposal is to develop, deploy, optimize and automate new website design/content, infrastructure and functionality to support and sustain online recruitment, engagement, and retention of adults interested in participating in AD-focused studies, creating a sustainable and enduring resource to researchers. To accomplish this, we will build off our successful Alzheimer's Prevention Registry (APR), an online registry launched in 2012 with >350,000 members, including ~90,000 enrolled in its GeneMatch (GM) program launched in 2015 via the following aims: 1) develop, deploy, optimize and automate a refreshed and sustainable website platform for the recruitment into and engagement of members in the APR and its GM program; 2) develop, deploy, optimize and automate a refreshed website platform supporting researchers' efforts to recruit APR and GM members; and 3) develop, deploy, optimize and automate new functionality and processes for referring APR and GM members to AD- focused studies. We hypothesize that the a) refreshed website will increase enrollment into the APR and GM as well as engagement and retention of members; b) enhanced AD-Researcher experience will increase the number of researchers / study sponsors leveraging the APR/GM for their participant recruitment needs, allowing them to complete enrollment faster; and c) new functionality will increase the percentage of APR and GM members screening for and enrolling in AD-focused studies.