A Protocol for the Inclusion of Minoritized Persons in Alzheimer Disease Research From the ADNI3 Diversity Taskforce

Ozioma C. Okonkwo, Department of Medicine and Wisconsin Alzheimer's Disease Research Center, University of Wisconsin School of Medicine and Public Health, Madison.
Monica Rivera Mindt, Department of Psychology, Latin American Latinx Studies Institute, and African and African American Studies, Fordham University, Bronx, New York.
Miriam T. Ashford, Northern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Catherine Conti, Northern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Joe Strong, Department of Medicine and Wisconsin Alzheimer's Disease Research Center, University of Wisconsin School of Medicine and Public Health, Madison.
Rema Raman, Alzheimer's Therapeutic Research Institute, University of Southern California, San Diego.
Michael C. Donohue, Alzheimer's Therapeutic Research Institute, University of Southern California, San Diego.
Rachel L. Nosheny, VA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California.
Derek Flenniken, Northern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Melanie J. Miller, Northern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Adam Diaz, Northern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Annabelle M. Soto, Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York.
Beau M. Ances, Department of Neurology, Washington University in Saint Louis, Saint Louis, Missouri.
Maryam R. Beigi, Department of Neurology, David Geffen School of Medicine, University of California, Los Angeles.
P Murali Doraiswamy, Departments of Psychiatry and Medicine, Duke University School of Medicine, Durham, North Carolina.
Ranjan Duara, Wein Center for Alzheimer's Disease and Memory Disorders, Mount Sinai Medical Center, Miami Beach, Florida.
Martin R. Farlow, Department of Neurology, Indiana University Health, Indianapolis.
Hillel T. Grossman, The Alzheimer Disease Research Center, Mount Sinai School of Medicine, New York, New York.
Jacobo E. Mintzer, Medical University of South Carolina, Ralph H. Johnson VA Healthcare Center, Charleston.
Christopher Reist, MindX Sciences Inc, Indianapolis, Indiana.
Emily J. Rogalski, Department of Neurology, University of Chicago, Chicago, Illinois.
Marwan N. Sabbagh, Alzheimer's and Memory Disorders Division, Department of Neurology, Barrow Neurological Institute, Phoenix, Arizona.
Stephen Salloway, Memory and Aging Program, Butler Hospital, Alpert Medical School, Brown University, Providence, Rhode Island.
Lon S. Schneider, Department of Psychiatry and Behavioral Sciences, Department of Neurology, Alzheimer's Disease Research Center, Keck School of Medicine of USC, Los Angeles, California.
Raj C. Shah, Department of Family and Preventive Medicine and the Rush Alzheimer's Disease Center, Rush University Medical Center, Chicago, Illinois.
Ronald C. Petersen, Alzheimer's Disease Research Center, Mayo Clinic College of Medicine, Rochester, Minnesota.
Paul S. Aisen, Alzheimer's Therapeutic Research Institute, University of Southern California, San Diego.
Michael W. Weiner, Northern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.

Document Type

Article

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.

Medical Subject Headings

Humans; Alzheimer Disease (ethnology); Aged; Female; Male; Cross-Sectional Studies; Aged, 80 and over; Middle Aged; Hispanic or Latino (statistics & numerical data); Black or African American (statistics & numerical data); Patient Selection; United States; Longitudinal Studies; Cognitive Dysfunction

Publication Date

8-1-2024

Publication Title

JAMA network open

E-ISSN

2574-3805

Volume

7

Issue

8

First Page

e2427073

PubMed ID

39120898

Digital Object Identifier (DOI)

10.1001/jamanetworkopen.2024.27073

Link to Full Text

Share

COinS