4 Advancing the science of recruitment and retention in ADRD clinical research among Hispanics/Latinos

Abstract

Objective:Inequity in Alzheimer’s disease and related dementias (ADRD) clinical research is severely hindering our progress towards a cure for all, while inflating national costs. ADRD alone is currently costing United States 321 billion dollars in 2022, projected to increase to 1 trillion by 2050. Alzheimer’s disease disproportionately impacts Black, Hispanic, Asian or Native Americans. Yet, ADRD clinical research to date has not included equitable number of participants from communities of color to be representative of the U.S. population. Hispanic/Latinos currently represent 1% of ADRD clinical trials’ samples despite representing 18% of the US population.Participants and Methods:In our previous outreach and recruitment study with the Human Connectome Project - Aging, we attained a 11.35% recruitment success rate of Hispanics/Latinos living in Los Angeles County Districts. We implemented a comprehensive Spanish-English bilingual, multi-method, multi-setting community-academic engagement, outreach, and recruitment protocol with a focus on brain health literary and ADRD biomarker research literacy.Results:Whereas community educational engagement and outreach was the most efficient and highest interest turn-out recruitment strategy, 61% of engaged and interested Hispanic/Latinos (50 years old and older) were automatically excluded during the telephone screening due to English-language proficiency/fluency. Highest enrollment success rate was from UCLA mailing list, clinical registries, and referrals. Hispanics/Latinos successfully recruited were bilingual or multilingual, 83% identified white as their racial background, 85% attained higher education, and 70% resided in middle-to-high income levels areas.Conclusions:Our results captured institutional barriers leading to a recruitment bias towards affluent Hispanics/Latinos with access to healthcare systems. Our applied science of recruitment and retention requires significant improvements in study design and methodology, tailored and targeted to communities’ socio-ecological context. It also requires the extrapolation of generalizable theoretically informed mechanisms of successful engagement, recruitment, and retention strategies for replication and/or modification in other settings/locations, and countries.