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

Author:

Langbaum Jessica B.1,Maloney Erin2,Hennessy Michael2,Harkins Kristin3,Karlawish Jason4,Nosheny Rachel L.56,Bleakley Amy2

Affiliation:

1. Alzheimer's Prevention Initiative Department Banner Alzheimer's Institute Phoenix Arizona USA

2. Department of Communication University of Delaware Newark Delaware USA

3. Department of Medicine University of Pennsylvania Philadelphia Pennsylvania USA

4. Departments of Medicine Medical Ethics and Health Policy, and Neurology, University of Pennsylvania Philadelphia Pennsylvania USA

5. Departments of Psychiatry and Behavioral Sciences Radiology and Biomedical Engineering, University of California San Francisco California USA

6. Northern California Institute for Research and Education (NCIRE) Department of Veterans Affairs Medical Center San Francisco California USA

Abstract

AbstractINTRODUCTIONAlzheimer's‐focused participant recruitment registries are tools for accelerating enrollment into studies, however, registry members are primarily White women.METHODSWe 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.RESULTSIntention 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.DISCUSSIONThe 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.

Funder

National Institute on Aging

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

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