How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults

Abstract

Introduction: Alzheimer's-focused participant recruitment registries are tools for accelerating enrollment into studies, however, registry members are primarily White women.

Methods: We conducted a national online survey of 1501 adults ages 50-80, oversampling for Black and Hispanic/Latino respondents, assessing intention to join a generic "brain health" registry and to join a registry that required specific tasks.

Results: Intention to join a registry was low (M 3.48, SD 1.77), and lower than intention to join a registry requiring specific tasks. Intention was greatest for registries requiring completing surveys (M 4.70, SD 1.77). Differences in intention were primarily between White women and Black women; differences between other groups were limited to specific tasks required.

Discussion: The results indicate uncertainty about what a registry is, its purpose, and/or the concept of "brain health." Using the Reasoned Action Approach (RAA) to develop evidence-based outreach messages describing a registry and required tasks may increase diversity.

Keywords: Alzheimer's; Reason Action Approach; diversity; participant; prevention; recruitment; registry.