A Precision Engagement Approach with Hispanics/Latinos for Alzheimer’s Disease Research: ECHAR-PE

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ABSTRACT Despite comprising nearly 20% of the United States population and being at increased risk for Alzheimer’s disease and related dementias (AD/ADRD), Hispanics/Latinos (H/Ls) comprise less than 10% of AD/ADRD research samples and only about 1% of AD/ADRD NIH-funded clinical trials. H/Ls are disproportionately more likely than non-H/Ls to have AD/ADRD due to several potential factors including longer lifespans; cardiovascular disease and related risk factors like hypertension; lower socioeconomic resources, related stress, and reduced access to healthcare– products of historic and systemic racism against communities of color. Limited representation in research clearly impacts our ability to characterize AD/ADRD clinical phenotypes as well as our ability to develop ethno-racially/culturally appropriate assessments and treatments. There is a critical need for a precision engagement of culturally and linguistically diverse individuals, such as H/Ls, for inclusion in AD/ADRD precision medicine research and establishment of sustainable, shareable, and heterogeneous data resources. The proposed work rests on the central hypothesis that inclusion of culturally and linguistically diverse individuals in AD/ADRD research requires the use of tailored approaches responsive to the needs and values of the communities we seek to include (precision engagement). Given the known systemic and institutional barriers that have historically excluded H/Ls from participating in AD/ADRD research, the proposed work applies a mixed method-, multi-disciplinary, precision engagement approach that is “straight-to-consumer,” community based, and culturally responsive. We will leverage resources from our Engaging Communities of Hispanics/Latinos for Aging Research (ECHAR) Network, which has established relationships with community partners in three cities with dense H/L populations (Houston, TX; Las Vegas, NV; Denver, CO) to identify community relevant language and ways to communicate AD/ADRD messaging to other H/Ls. Targeting the stated goal, the proposed work aims to (1) refine and (2) disseminate a culturally responsive multimedia “toolkit” for use in engaging and recruiting Hispanic/Latino adults into AD/ADRD research, monitoring its reach and uptake via various methods, including a phone-based risk calculator. Along these lines, we aim to develop a risk registry that we will leverage for (3) collection of behavioral data and (4) blood specimens that will allow us the workflow and pilot data necessary to begin characterizing the relationships of these variables in a diverse sample of H/Ls. By the end of the proposed project, we expect to have an evidence based, community engaged, culturally responsive engagement toolkit and risk registry for engaging Hispanic/Latino individuals into AD/ADRD research. Moreover, we expect to have a well-characterized registry of H/Ls and data repository available for additional research studies on causal pathways related to AD/ADRD.