@article{d3d3ea7399f74bb1b286a9da141a049b,
title = "Improving generalizability and study design of Alzheimer's disease cohort studies in the United States by including under-represented populations",
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.",
author = "Mindt, {Monica Rivera} and Ozioma Okonkwo and Weiner, {Michael W.} and Veitch, {Dallas P.} and Paul Aisen and Miriam Ashford and Godfrey Coker and Donohue, {Michael C.} and Langa, {Kenneth M.} and Garrett Miller and Ronald Petersen and Rema Raman and Rachel Nosheny",
note = "Funding Information: It should be noted that all recruitment activities require funding resources. The Latino BHR and associated marketing efforts were funded by the California Department of Public Health and this grant has been renewed. However, many research grants emphasize funding of data collection and analysis, and often recruitment efforts are underfunded, presenting a barrier to the use of this approach by researchers who are limited by funding availability. Funding Information: We would like to acknowledge and thank all of the participants, leadership, team members, and funding organizations from the following projects who made this work possible, including: the Brain Health Registry (BHR; PI: M. Weiner; National Institutes of Health/National Institute on Aging [NIH/NIA] R33AG062867‐02); California Latino Brain Health Registry study (CAL‐BHR; MPIs: R. Nosheny and M. Weiner; California Department of Public Health 19‐10616); Community‐Engaged Digital Alzheimer's Research (CEDAR; MPIs: R. Nosheny, M. Rivera Mindt, and C. Hill; Genentech Health Equity Innovations 2020 Fund #G‐89294); and ADNI3 (PI: M. Weiner; NIH/NIA 5U19AG024904‐14). We are especially grateful to our CAL‐BHR, CEDAR, and ADNI Community‐Scientific Partnership Board (CSPB) members for their time and insightful comments to guide this work, as well as our 13 ADNI3 DVTF Study Sites for their tremendous dedication and hard work, including: Butler (PI: S. Salloway); Duke University (PI: M. Doraiswamy); Icahn School of Medicine at Mount Sinai (PI: H. Grossman); Indiana University Purdue University Indianapolis (IUPUI; PI: M. Farlow); Long Beach VA (PI: C. Reist); Lou Ruvo (PIs: M. Sabbagh, J. Shi, and D. Wint); Northwestern University (PI: E. Roglaski); Rush University (PI: R. Shah); South Carolina Institute of Brain Health (PI: J. Mintzer); University of California Los Angeles (UCLA; MPIs: M. Beigi and K.A. Vossel); University of Southern California (USC; PI: Lon Schneider); Washington University (PI: B. Ances); and Wien (PI: R. Duara). Publisher Copyright: {\textcopyright} 2022 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",
year = "2022",
doi = "10.1002/alz.12823",
language = "English (US)",
journal = "Alzheimer's and Dementia",
issn = "1552-5260",
publisher = "Elsevier Inc.",
}