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

Monica Rivera Mindt, Ozioma Okonkwo, Michael W. Weiner, Dallas P. Veitch, Paul Aisen, Miriam Ashford, Godfrey Coker, Michael C. Donohue, Kenneth M. Langa, Garrett Miller, Ronald Petersen, Rema Raman, Rachel Nosheny

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)1549-1557
Number of pages9
JournalAlzheimer's and Dementia
Volume19
Issue number4
DOIs
StatePublished - Apr 2023

ASJC Scopus subject areas

  • Epidemiology
  • Health Policy
  • Developmental Neuroscience
  • Clinical Neurology
  • Geriatrics and Gerontology
  • Cellular and Molecular Neuroscience
  • Psychiatry and Mental health

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