Successful strategies for supporting diverse representation in Alzheimer's disease research.

INTRODUCTION

The Emory Goizueta Alzheimer's Disease Research Center implemented targeted, community-based programs emphasizing health education and collaboration with community partners. This paper reports on their impact on research enrollment and the lessons learned.

METHODS

We analyzed attendance data from in-person events for new participants in the Uniform Data Set (UDS) cohort. Using regression modeling, we examined relationships among demographics and time to UDS enrollment.

RESULTS

From 2016 to 2024, 194 adults enrolled in the UDS. They were mostly women (59%), evenly divided between African American (AA; 54%) and non-Hispanic White (NHW; 46%) individuals, and well-educated (median 16 years). Before consent, more AA participants attended events (82.7% vs. 42.0%; p < 0.0001) and a greater number of events (median 2, interquartile range [IQR]: 1-4 vs. 0, IQR: 0-2; p < 0.0001) than their NHW peers. Among all race-gender groups, the time to enrollment was shortest for AA men.

DISCUSSION: Collaborative, community-based, structured outreach initiatives with focused content can influence research engagement.

HIGHLIGHTS: Despite higher dementia risk, older adults from understudied populations have low enrollment in aging and cognition studies, limiting the generalizability of knowledge about biomarkers and related mechanisms. Besides socioeconomic factors, disproportionate exclusion from screening criteria, less access to expert care, and fewer professional referrals are linked to lower research participation rates. Intentional recruitment activities that incorporate educational content and target community input about health challenges can enhance engagement and promote more representative cohorts, including understudied populations.