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

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Author(s)Langbaum, Jessica B.
Author(s)Maloney, Erin
Author(s)Hennessy, Michael
Author(s)Harkins, Kristin
Author(s)Karlawish, Jason
Author(s)Nosheny, Rachel L.
Author(s)Bleakley, Amy
Date Accessioned2023-08-14T19:38:43Z
Date Available2023-08-14T19:38:43Z
Publication Date2023-05-19
DescriptionThis article was originally published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. The version of record is available at: https://doi.org/10.1002/alz.13126. © 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.
AbstractINTRODUCTION 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.
SponsorThe authors thank Drs. Emily Largent, Shana Stites, Miriam Ashford, and Ms. Winnie Kwang for their assistance with drafting the survey. This paper was made possible by Grant No. R01AG063954 from the National Institute on Aging (NIA). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH/NIA. CONFLICT OF INTEREST STATEMENT Jessica Langbaum received consulting fees from Alector, Biogen, Denovo Biopharma, and Provoc. She is a full-time employee of Banner Health. Banner Health receives or received funding from the NIH, Roche, and Eli Lilly for the conduct of Alzheimer's prevention trials for which she serves on the sponsor team. Rachel Nosheny receives funding to UCSF from National Institutes of Health, California Department of Public Health, and Genentech, Inc. Health Equity Innovations Fund. Jason Karlawish is a site investigator for clinical trials sponsored by Biogen and Lilly. Erin Maloney, Michael Hennessy, Kristin Harkins, and Amy Bleakley report no conflicts. Author disclosures are available in the supporting information: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.13126#support-information-section.
CitationLangbaum, JB, Maloney, E, Hennessy, M, et al. 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. Alzheimer's Dement. 2023; 1-8. https://doi.org/10.1002/alz.13126
ISSN1552-5279
URLhttps://udspace.udel.edu/handle/19716/33067
Languageen_US
PublisherAlzheimer's & Dementia: The Journal of the Alzheimer's Association
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
KeywordsAlzheimer's
Keywordsdiversity
Keywordsparticipant
Keywordsprevention
KeywordsReason Action Approach
Keywordsrecruitment
Keywordsregistry
TitleHow 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
TypeArticle
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