Early norming data for engagement and recruitment of diverse populations into ADRD research

Abstract

AbstractBackgroundResearch studies and clinical trials in Alzheimer’s disease and related dementias (ADRD) attract smaller and increasingly less‐representative populations. Enrollment barriers are compounded for historically marginalized and minoritized populations (HMM), despite a higher risk of ADRD. Advancements in participant recruitment, retention, and engagement (RER), and clinical research design are urgently needed to address ADRD disparities and inequities. In light of these critical shortfalls in diverse and representative RER, we aimed to improve the understanding of research awareness and motivations of lay communities.MethodPartnering with a community mobilization firm, we canvassed 15,000 residents of Harris County, TX, a diverse county that broadly generalizes to populations across the United States. Oversampling of multiple HMM communities was conducted to assess enrollment barriers and facilitators, as well as attitudes regarding ADRD and ADRD research. Individuals were contacted via a combination of in‐person and phone canvassing. These detailed canvassing data were paired with geospatial mapping tools to develop robust, dynamic catchment areas.ResultAn initial set of RER norms were developed across HMM and non‐HMM populations; this presentation focuses on stratified norms for Black, Latinx, and East Asian populations intersecting with gender identity and educational attainment to demonstrate the complexity of tailored best practices in RER, as well as identification of HMM subsamples that may be readily engaged in RER for ADRD studies. Using Houston as a case study, these norms were developed in contextualized catchment areas that ascertain the type, prevalence, and intersection of ADRD research barriers. Recommendations to improve diversity and representativeness in ADRD research are additionally summarized for HMM and non‐HMM populations.ConclusionThe current study sought to develop a robust approach to RER centering sustainable and inclusive recruitment into ADRD studies. These data were used to develop detailed RER profiles of general and intersectional HMM populations that may function as initial RER norms, supplanting poorly‐defined catchment area estimates for ADRD study sites. These tools will allow researchers to define communities a priori to limit sampling and recruitment bias, and to determine RER barriers with validity. These data are foundational to advance equitable progress in dementia research.