Equity and Engagement for Neurologic Research Participation at the Goizueta Alzheimer’s Disease Research Center of Emory University

Abstract

AbstractBackgroundAfrican Americans (AA) are disproportionately affected by Alzheimer’s disease[i], consistently underserved by social and health care systems, and greatly underrepresented in Alzheimer’s research.ObjectivesTo better engage the Metropolitan Atlanta population of African Americans, the Goizueta Alzheimer’s Disease Research Center (ADRC) at Emory University has a dedicated focus on the recruitment and retention of AA individuals into ADRC research and brain donation programs.MethodThe cohort examined for this paper were entered into the National Alzheimer’s Coordinating Center (NACC) Uniform Data Set, a longitudinal registry of NIA‐NIH, between November 2015 and February 2020. Equity in research participation has improved by sustaining relationships in the African American community with an educational outreach that addresses health, healthcare access, and the importance of research participation for the elimination of healthcare disparities.ResultsThis population of research volunteers at the Goizueta ADRC, irrespective of race, were similar in age, educational attainment, marital status, and overall health status. Before consenting to research, the following behaviors were observed in older adults: African Americans (AA) are 10.6 times more likely to attend in‐person community events when compared to European Americans (EA). African American (AA) women require more “touches” (phone calls and attendance at educational outreach events) than both Caucasian women AND men. African American (AA) women are the most distinct group with the longest time from first contact to consent. ConclusionThese findings can be used to create a more specific approach to engaging older African American adults in longitudinal neurologic or other health research.