Sanaz Dabiri, Sol Price Schaeffer Center and Alzheimer's Therapeutic Research Institute, University of Southern California, USA
J Prev Alzheimers Dis. 2024;11(6):1647-1672. doi: 10.14283/jpad.2024.149.
Despite higher dementia prevalence in racial and ethnic minoritized communities, they are underrepresented in Alzheimer's disease clinical trials. Community-based recruitment strategies are believed to yield positive outcomes in various fields, such as cancer and cardiovascular clinical trials, but their outcomes in Alzheimer's disease and Related Dementias (AD/ADRD) require further study. In this systematic rapid review, we synthesized the available evidence on community-engaged recruitment strategies in enhancing participation in AD/ADRD clinical trials and observational study participation.
We searched and identified studies describing a community-based recruitment approach for racial and ethnic minoritized communities across seven databases (Pubmed, OVID MEDLINE, Cochrane Central Register of Controlled Trials, CINAHL, PsychINFO, Web of Science, and EMBASE).
Out of 1915 screened studies, 49 met the inclusion criteria. Most studies employed multiple community-based recruitment approaches, including educational presentations, collaborations with community-based faith organizations, community advisory boards, and engagement with local clinics or health professionals. 52% of studies targeted more than one racial and ethnic minoritized population, primarily African Americans and then Hispanic/Latino. Gaps in knowledge about AD/ADRD, its increased risk among minoritized populations, distrust, and stigma were noted as barriers to research participation. Approximately 50% of the studies specified whether they evaluated their recruitment approaches, and in studies where approaches were evaluated, there was substantial heterogeneity in methods utilized.
The quality of available evidence on the use of community-based recruitment approaches to include racial and ethnic minoritized populations in AD/ADRD research, particularly in clinical trials, is limited. Systematic assessment of recruitment strategies is urgently needed to increase the evidence base around community-engaged recruitment approaches.
尽管少数族裔社区的痴呆症患病率较高，但他们在阿尔茨海默病临床试验中的代表性不足。基于社区的招募策略被认为在癌症和心血管临床试验等各个领域产生了积极的结果，但它们在阿尔茨海默病和相关痴呆症（AD/ADRD）中的结果需要进一步研究。在这项系统的快速综述中，我们综合了现有关于增强少数族裔社区参与 AD/ADRD 临床试验和观察性研究参与的社区参与式招募策略的证据。
我们在七个数据库（PubMed、OVID MEDLINE、Cochrane 对照试验中心注册、CINAHL、PsychINFO、Web of Science 和 EMBASE）中搜索并确定了描述针对少数族裔社区的基于社区的招募方法的研究。
在筛选出的 1915 项研究中，有 49 项符合纳入标准。大多数研究采用了多种基于社区的招募方法，包括教育演示、与基于社区的信仰组织合作、社区咨询委员会，以及与当地诊所或卫生专业人员合作。52%的研究针对不止一个少数族裔群体，主要是非裔美国人和西班牙裔/拉丁裔。研究参与者知识上的差距、AD/ADRD 在少数族裔群体中的风险增加、不信任和污名化被认为是参与研究的障碍。大约 50%的研究指明了他们是否评估了他们的招募方法，在对方法进行评估的研究中，所使用的方法存在很大的异质性。
关于使用基于社区的招募方法将少数族裔纳入 AD/ADRD 研究，特别是临床试验的证据质量有限。迫切需要系统评估招募策略，以增加围绕社区参与式招募方法的证据基础。
