A Protocol for the Inclusion of Minoritized Persons in Alzheimer Disease Research From the ADNI3 Diversity Taskforce
Year: 2024
Type: article
Study design: Observational Study
Abstract: Importance: Black or African American (hereinafter, Black) and Hispanic or Latino/a/x (hereinafter, Latinx) adults are disproportionally affected by Alzheimer disease, but most research studies do not enroll adequate numbers of both of these populations. The Alzheimer's Disease Neuroimaging Initiative-3 (ADNI3) launched a diversity taskforce to pilot a multipronged effort to increase the study inclusion of Black and Latinx older adults. Objective: To describe and evaluate the culturally informed and community-engaged inclusion efforts to increase the screening and enrollment of Black and Latinx older adults in ADNI3. Design, Setting, and Participants: This cross-sectional study used baseline data from a longitudinal, multisite, observational study conducted from January 15, 2021, to July 12, 2022, with no follow-up. The study was conducted at 13 ADNI3 sites in the US. Participants included individuals aged 55 to 90 years without cognitive impairment and those with mild cognitive impairment or Alzheimer disease. Exposures: Efforts included (1) launch of an external advisory board, (2) changes to the study protocol, (3) updates to the digital prescreener, (4) selection and deployment of 13 community-engaged research study sites, (5) development and deployment of local and centralized outreach efforts, and (6) development of a community-science partnership board. Main Outcomes and Measures: Screening and enrollment numbers from centralized and local outreach efforts, digital advertisement metrics, and digital prescreener completion. Results: A total of 91 participants enrolled in the trial via centralized and local outreach efforts, of which 22 (24.2%) identified as Latinx and 55 (60.4%) identified as Black (median [IQR] age, 65.6 [IQR, 61.5-72.5] years; 62 women [68.1%]). This represented a 267.6% increase in the monthly rate of enrollment (before: 1.11 per month; during: 4.08 per month) of underrepresented populations. For the centralized effort, social media advertisements were run between June 1, 2021, and July 31, 2022, which resulted in 2079 completed digital prescreeners, of which 1289 met criteria for subsequent site-level screening. Local efforts were run between June 1, 2021, to July 31, 2022. A total of 151 participants underwent site-level screening (100 from local efforts, 41 from centralized efforts, 10 from other sources). Conclusions and Relevance: In this cross-sectional study of pilot inclusion efforts, a culturally informed, community-engaged approach increased the inclusion of Black and Latinx participants in an Alzheimer disease cohort study.
Source: JAMA Network Open
Authors: Ozioma C. Okonkwo, Monica Rivera Mindt, Miriam T. Ashford, Catherine Conti, Joe Strong, Rema Raman, Michael C. Donohue, Rachel L. Nosheny, Derek Flenniken, Melanie J. Miller, Adam Diaz, Annabelle M. Soto, Beau M. Ances, Maryam R. Beigi, P. Murali Doraiswamy, Ranjan Duara, Martin R. Farlow, Hillel T. Grossman, Jacobo E. Mintzer, Christopher Reist, Emily J. Rogalski, Marwan N. Sabbagh, Stephen Salloway, Lon S. Schneider, Raj C. Shah, Ronald C. Petersen, Paul S. Aisen, Michael W. Weiner, Alzheimer’s Disease Neuroimaging Initiative
Institutions: University of Wisconsin–Madison, Fordham University, Icahn School of Medicine at Mount Sinai, San Francisco VA Medical Center, Northern California Institute for Research and Education, University of Southern California, University of California, San Francisco, Washington University in St. Louis, University of California, Los Angeles, Duke University, Duke Medical Center, Florida International University, University of Florida Health, University of Florida, Mount Sinai Medical Center, Indiana University Health, Medical University of South Carolina, Ralph H. Johnson VA Medical Center, University of California, Irvine, University of Chicago, Barrow Neurological Institute, Brown University, Butler Hospital, Rush University Medical Center, Mayo Clinic
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,000
Funders: Alzheimer's Association, Alzheimer's Drug Discovery Foundation, Merck, Roche, Biogen, Novartis Pharmaceuticals Corporation, Servier, IXICO, National Institutes of Health, Genentech, GE Healthcare, Canadian Institutes of Health Research, National Institute on Aging, National Institute of Biomedical Imaging and Bioengineering
Awards: G1593128567, G2957681590, G5640525220
OpenAlex ID: W4401454949