Recruitment and Retention for Alzheimer’s Disease Diversity Genetic Cohorts in the ADSP (READD‐ADSP)

Abstract

AbstractBackgroundGenomic studies constitute a proven approach for identifying new therapeutic targets. However, there is a strong European bias that exists in AD genetic studies. This study will increase the global resource of the (ADSP) by including underrepresented African ancestry (African Americans (AA), African (Af)) and Hispanic/Latinx (HL) individuals. Reasons underlying these disparities are complex, but notable barriers to research participation for AA and HL communities must be addressed to improve participation.MethodREADD‐ADSP will recruit, retain, and evaluate 13,000 participants of diverse ethnicity, including 5,000 Af, 4,000 AA, and 4,000 US HL. The study in Africa involves multiple sites in 9 African countries operating under the African Dementia Consortium (AfDC). Socio‐demographic, clinical, and neurocognitive data will be obtained using protocol‐guided evaluation procedures that were developed to accommodate different cultures, to support phenotype harmonization, and for joint studies of biological and social risks of AD. A US and AfDC clinical adjudication committee will apply culturally algorithms for AD to adjudicate data from the cohorts.Communities are engaged through culturally informed efforts to improve trustworthiness and to understand how to both recruit and retain diverse populations,ResultSuccessful recruitment and retention of a globally diverse, well‐phenotyped cohort for genetic studies requires a multi‐level recruitment strategy, which includes building trust in diverse communities, and using evidence‐based community engaged research principles. In order to reach our enrollment goal, we engage diverse communities through a culturally relevant marketing campaign, using market research to inform best practices. We use clinic‐based strategies, as well as family and stakeholder involvement for snowball recruitment. Finally, we provide culturally appropriate training and resources to assure highly skilled multi‐site recruitment teams. We have recruited over 2,500 underrepresented participants, including 200 multi‐plex families using these strategies.ConclusionOutcomes from READD‐ADSP will enhance focused, precision medicine approaches for AD and reduce global health disparities across ancestries. In addition to clinic‐based strategies, community‐based strategies that recruit and retain diverse populations require intentional investments that remove trust barriers and support community priorities.