Establishing the science behind Alzheimer's recruitment registries: opportunities for increasing diversity and accelerating enrollment into trials

项目概要/摘要 阿尔茨海默病（AD）引起的痛苦仍然是我们最大的未满足的医疗需求之一， 次随着紧迫感的增强，许多AD预防试验正在启动，需要一个 健康的老年人数量空前，需要进行筛查，以确定数千名有资格参加的人。 认识到这一障碍，《国家防治AD计划》等倡议呼吁更多地关注： 增加临床试验和其他临床研究的入组人数，2）监测和确定策略 增加少数种族和少数民族在AD研究中的入学率。国家计划的一个结果是， 《阿尔茨海默病临床研究招募和参与国家战略》承认 发展和理解新的“招聘科学”的要求。近日，多个AD 已经开发了招募登记处，包括但不限于阿尔茨海默病预防登记处， GeneMatch，大脑健康注册中心和GenePool。尽管每个人对参与者的要求有所不同 就信息和时间承诺（以下称为“参与层次”）而言，各登记册共享一个 加速AD研究入组的共同目标。然而，尽管在所有四个国家招募了> 45万人， 在登记研究中，每个登记研究的入组者主要是女性和非西班牙裔/白色人，从而延续了 AD预防试验参与者缺乏多样性。本建议的目的是了解如何 向男性和少数群体有效宣传参与AD预防试验的重要性。这 该提案将通过以下目标实现这一目标：1）使用半结构化面试和全国范围内的 代表性调查，以确定相关的心理社会决定因素（态度，规范，功效/控制）， 每个“参与层次”，并了解它们如何因种族/民族和性别而变化; 2）开发和测试 通过针对男性的重点小组进行迭代概念测试， 和少数民族和在线信息测试，以评估说服力，以及3）部署基于证据的信息 进入我们的真实世界的测试环境，测量他们对男性和少数民族的入学率的影响， 登记和登记者随后参与AD预防试验的意愿。我们假设 男性和少数民族在每个登记处的注册人数将增加，对多样性产生积极的下游影响 在AD预防试验参与者中。

Project Summary/Abstract The suffering caused by Alzheimer’s disease (AD) remains one of the greatest unmet medical needs of our times. 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. Recognizing this obstacle, initiatives such as the National Plan to Address AD call for greater attention to 1) increasing enrollment into clinical trials and other clinical research, and 2) monitoring and identifying strategies to increase enrollment of racial and ethnic minorities in AD studies. An outgrowth of the National Plan is the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research which recognizes the requirement for developing and understanding a new “science of recruitment.” Recently, multiple AD recruitment registries have been developed, including but not limited to the Alzheimer’s Prevention Registry, GeneMatch, the Brain Health Registry, and GenePool. Although each differs in what they require of participants in terms of information and time commitment (herein referred to as “tiers of participation”), the registries share a common goal of accelerating enrollment into AD studies. However, despite enrolling >450,000 across all four registries, enrollees in each registry are predominantly female and non-Hispanic / white, thereby perpetuating the lack of diversity among AD prevention trial participants. The objective of this proposal is to understand how to effectively communicate the importance of AD prevention trial participation to men and minorities. This proposal will accomplish this objective via the following aims: 1) using semi-structured interviews and a nationally representative survey to identify the relevant psychosocial determinants (attitudes, norms, efficacy/control) for each “tier of participation” and understanding how they vary by race/ethnicity and gender; 2) develop and test evidence-based messaging to join each registry via iterative concept testing via focus groups enriched for men and minorities and online message testing to assess persuasiveness, and 3) deploy evidence-based messages into our real-word testing environment, measuring their impact on enrollment of men and minorities into each registry and enrollees’ subsequent willingness to participate in AD prevention trials. We hypothesize that enrollment of men and minorities into each registry will increase, with positive downstream effects on diversity among AD prevention trial participants.