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Improving generalizability and study design of Alzheimer's disease cohort studies in the United States by including under-represented populations.

Authors :
Mindt MR
Okonkwo O
Weiner MW
Veitch DP
Aisen P
Ashford M
Coker G
Donohue MC
Langa KM
Miller G
Petersen R
Raman R
Nosheny R
Source :
Alzheimer's & dementia : the journal of the Alzheimer's Association [Alzheimers Dement] 2023 Apr; Vol. 19 (4), pp. 1549-1557. Date of Electronic Publication: 2022 Nov 13.
Publication Year :
2023

Abstract

The poor generalizability of clinical research data due to the enrollment of highly educated, non-Latinx White participants hampers the development of therapies for Alzheimer's disease (AD). Black and Latinx older adults have a greater risk for dementia, yet it is unclear how health-care disparities and sociocultural factors influence potential AD therapies and prognosis. Low enrollment of under-represented populations may be attributable to several factors including greater exclusion due to higher rates of comorbidities, lower access to AD clinics, and the legacy of unethical treatment in medical research. This perspective outlines solutions tested in the Brain Health Registry (BHR) and the Alzheimer's Disease Neuroimaging Initiative (ADNI), including culturally-informed digital research methods, community-engaged research strategies, leadership from under-represented communities, and the reduction of exclusion criteria based on comorbidities. Our successes demonstrate that it is possible to increase the inclusion and engagement of under-represented populations into US-based clinical studies, thereby increasing the generalizability of their results.<br /> (© 2022 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Details

Language :
English
ISSN :
1552-5279
Volume :
19
Issue :
4
Database :
MEDLINE
Journal :
Alzheimer's & dementia : the journal of the Alzheimer's Association
Publication Type :
Academic Journal
Accession number :
36372959
Full Text :
https://doi.org/10.1002/alz.12823