Gooding Diane Carol, Carter Fabu P, Zuelsdorff Megan, Gee Alexander, Anthony Ruben L, Boustead Barbara, Russell Tracey, Chin Nathaniel A, Clark Lindsay, Cornelius Kala, Asthana Sanjay, Johnson Sterling C, Gleason Carey E
Department of Psychology, UW-Madison, Madison, Wisconsin, USA.
Department of Psychiatry, UW-Madison, Madison, Wisconsin, USA.
Alzheimers Dement Behav Socioecon Aging. 2025 Jun;1(2). doi: 10.1002/bsa3.70008. Epub 2025 Apr 6.
Although Alzheimer's disease and related dementias (ADRDs) are disproportionately high in Black/African American (AA) individuals, this population is under-included in biomarker studies and clinical trials. This underrepresentation contributes to health disparities in treatment and disease outcomes. The Wisconsin Alzheimer's Disease Research Center (ADRC) and the Wisconsin Registry for Alzheimer's Prevention (WRAP) at the University of Wisconsin-Madison have been successfully conducting the African Americans Fighting Alzheimer's in Midlife (AA-FAIM) Project since 2016. The AA-FAIM Project aims to promote the timely, valid detection of ADRD for Black/AA groups and to increase their inclusion in ADRD research.
We describe the infrastructure and engagement strategies of AA-FAIM, a longitudinal research program focused on examining and reducing the health disparities observed in Black/AA individuals facing risk for ADRD. We describe practical, sustainable methods used to meet our recruitment, enrollment, participation, and retention goals.
We report enrollment numbers as evidence of the effectiveness of this work. We attribute our success to several strengths. First, AA-FAIM incorporates the principles of community-based participatory research (CBPR), including strong community partnerships and an active, engaged advisory board. Second, the program is guided by the Participant and Relationship-Centered Research Engagement (PRCRE) and the STEPS models. Third, AA-FAIM uses creative, culturally respectful programs. Fourth, a key element is the partnership between the Academy and the people embedded within the community.
We discuss our experiences establishing and maintaining the AA-FAIM Project and offer insights to increase the representation and inclusion of Black/AA individuals in ADRD studies.
尽管阿尔茨海默病及相关痴呆症（ADRDs）在黑人/非裔美国人（AA）个体中的发病率 disproportionately 偏高，但该人群在生物标志物研究和临床试验中的纳入比例却很低。这种代表性不足导致了治疗和疾病结果方面的健康差异。自2016年以来，威斯康星大学麦迪逊分校的威斯康星阿尔茨海默病研究中心（ADRC）和威斯康星阿尔茨海默病预防登记处（WRAP）成功开展了“中年非裔美国人抗击阿尔茨海默病”（AA-FAIM）项目。AA-FAIM项目旨在促进对黑人/非裔美国人群体ADRD的及时、有效检测，并增加他们在ADRD研究中的纳入比例。
我们描述了AA-FAIM的基础设施和参与策略，这是一个纵向研究项目，专注于检查和减少在面临ADRD风险的黑人/非裔美国人中观察到的健康差异。我们描述了用于实现招募、入组、参与和保留目标的实用、可持续方法。
我们报告入组人数作为这项工作有效性的证据。我们将成功归因于几个优势。首先，AA-FAIM纳入了基于社区的参与性研究（CBPR）原则，包括强大的社区伙伴关系和一个积极参与的咨询委员会。其次，该项目以参与者和关系为中心的研究参与（PRCRE）和STEPS模型为指导。第三，AA-FAIM使用富有创意、尊重文化的项目。第四，一个关键要素是学术机构与社区内人员之间的伙伴关系。
我们讨论了建立和维护AA-FAIM项目的经验，并提供见解以增加黑人/非裔美国人在ADRD研究中的代表性和纳入比例。
