A Protocol for the Inclusion of Minoritized Persons in Alzheimer Disease Research From the ADNI3 Diversity Taskforce
Authors: Okonkwo Ozioma C. , Rivera Mindt Monica , Ashford Miriam T. , Conti Catherine , Strong Joe , Raman Rema , Donohue Michael C. , Nosheny Rachel L. , Flenniken Derek , Miller Melanie J. , Diaz Adam , Soto Annabelle M. , Ances Beau M. , Beigi Maryam R. , Doraiswamy P. Murali , Duara Ranjan , Farlow Martin R. , Grossman Hillel T. , Mintzer Jacobo E. , Reist Christopher , Rogalski Emily J. , Sabbagh Marwan N. , Salloway Stephen , Schneider Lon S. , Shah Raj C. , Petersen Ronald C. , Aisen Paul S. , Weiner Michael W. ,   Alzheimer’s Disease Neuroimaging Initiative
Published: August 2024

ImportanceBlack 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.ObjectiveTo 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 ParticipantsThis 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.ExposuresEfforts 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 MeasuresScreening and enrollment numbers from centralized and local outreach efforts, digital advertisement metrics, and digital prescreener completion.ResultsA 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 RelevanceIn 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.