@article{TEXTUAL,
      recid = {13373},
      author = {Okonkwo, Ozioma C. and Rivera Mindt, Monica and Ashford,  Miriam T. and Conti, Catherine and Strong, Joe and Raman,  Rema and Donohue, Michael C. and Nosheny, Rachel L. and  Flenniken, Derek and Miller, Melanie J. and Diaz, Adam and  Soto, Annabelle M. and Ances, Beau M. and Beigi, Maryam R.  and Doraiswamy, P. Murali and Duara, Ranjan and Farlow,  Martin R. and Grossman, Hillel T. and Mintzer, Jacobo E.  and Reist, Christopher and Rogalski, Emily J.},
      title = {A Protocol for the Inclusion of Minoritized Persons in  Alzheimer Disease Research From the ADNI3 Diversity  Taskforce},
      journal = {JAMA Network Open},
      address = {2024-08-09},
      number = {TEXTUAL},
      abstract = {&lt;p&gt;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.&lt;/p&gt;  &lt;p&gt;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.&lt;/p&gt; &lt;p&gt;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.&lt;/p&gt; &lt;p&gt;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.&lt;/p&gt; &lt;p&gt;Main Outcomes and Measures: Screening and  enrollment numbers from centralized and local outreach  efforts, digital advertisement metrics, and digital  prescreener completion.&lt;/p&gt; &lt;p&gt;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).&lt;/p&gt; &lt;p&gt;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.&lt;/p&gt;},
      url = {http://knowledge.uchicago.edu/record/13373},
}