An Elicitation Study to Understand Black, Hispanic, and Male Older Adults’ Willingness to Participate in Alzheimer’s Disease-Focused Research Registries

Abstract

Background: There is a lack of racial, ethnic, and sex diversity in recruitment research registries and Alzheimer’s disease (AD) research studies and trials. Theory-based recruitment messages may provide an opportunity to increase study participant diversity in AD research studies and trials. Objective: To identify behavioral, normative, and control beliefs that are associated with joining an AD-focused recruitment registry among historically underrepresented groups. Method: Using a Reasoned Action Approach, we conducted 60 semi-structured phone interviews in 2020 among White, Black, and Hispanic adults ages 49–79 years in Philadelphia, PA. Underlying beliefs were elicited for the target behavior of “signing up to be on a registry for brain health research studies in the next month.” Percentages based on counts are reported for the overall sample and by race and ethnicity and sex. Results: Participants were most concerned that if they were to sign up for a registry, they would be asked to participate in experimental studies. Advancing science to help others was a commonly reported positive belief about signing up. Participants’ children and friends/neighbors were important from a normative perspective. Barriers to enrollment focused on logistical concerns and inconvenient sign-up processes, including using a computer. Results show generally few racial and ethnic or sex group differences. Conclusion: The elicited beliefs from underrepresented groups offer a basis for understanding the behavior of signing up for research registries. However, there were few differences between the groups. Implications for outreach and recruitment are discussed.