TY - JOUR
T1 - A Protocol for the Inclusion of Minoritized Persons in Alzheimer Disease Research From the ADNI3 Diversity Taskforce
AU - Alzheimer’s Disease Neuroimaging Initiative
AU - Okonkwo, Ozioma C.
AU - Rivera Mindt, Monica
AU - Ashford, Miriam T.
AU - Conti, Catherine
AU - Strong, Joe
AU - Raman, Rema
AU - Donohue, Michael C.
AU - Nosheny, Rachel L.
AU - Flenniken, Derek
AU - Miller, Melanie J.
AU - Diaz, Adam
AU - Soto, Annabelle M.
AU - Ances, Beau M.
AU - Beigi, Maryam R.
AU - Doraiswamy, P. Murali
AU - Duara, Ranjan
AU - Farlow, Martin R.
AU - Grossman, Hillel T.
AU - Mintzer, Jacobo E.
AU - Reist, Christopher
AU - Rogalski, Emily J.
AU - Sabbagh, Marwan N.
AU - Salloway, Stephen
AU - Schneider, Lon S.
AU - Shah, Raj C.
AU - Petersen, Ronald C.
AU - Aisen, Paul S.
AU - Weiner, Michael W.
AU - Beigi, Maryam
AU - Farlow, Martin
AU - Rogalski, Emily
AU - Ances, Beau
AU - Grossman, Hillel
AU - Mintzer, Jacobo
N1 - Publisher Copyright:
© 2024 Okonkwo OC et al.
PY - 2024/8/9
Y1 - 2024/8/9
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85201038895&partnerID=8YFLogxK
U2 - 10.1001/jamanetworkopen.2024.27073
DO - 10.1001/jamanetworkopen.2024.27073
M3 - Article
C2 - 39120898
AN - SCOPUS:85201038895
SN - 2574-3805
VL - 7
SP - e2427073
JO - JAMA Network Open
JF - JAMA Network Open
IS - 8
ER -