The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core: A culturally informed, community-engaged research (CI-CER) model to advance brain health equity

被引:2
|
作者
Mindt, Monica Rivera [1 ,2 ,3 ,4 ,5 ]
Arentoft, Alyssa [6 ]
Calcetas, Amanda T. [1 ]
Guzman, Vanessa A. [5 ]
Amaza, Hannatu [7 ]
Ajayi, Adeyinka [5 ]
Ashford, Miriam T. [8 ,9 ]
Ayo, Omobolanle [5 ]
Barnes, Lisa L. [10 ,11 ]
Camuy, Alicia [5 ]
Conti, Catherine [8 ,9 ]
Diaz, Adam [8 ,9 ]
Easter, Bashir [11 ,12 ]
Gonzalez, David J. [11 ]
Dotson, Yolanda Graham [11 ,13 ]
Hoang, Isabella [7 ]
Germano, Kaori Kubo [1 ]
Maestre, Gladys E. [11 ,14 ]
Magana, Fabiola [7 ]
Meyer, Oanh L. [11 ,15 ]
Miller, Melanie J. [8 ,9 ]
Nosheny, Rachel [8 ,9 ,16 ,17 ]
Park, Van M. Ta [11 ,18 ,19 ]
Parkins, Shaniya [5 ]
Thomas, Lisa Renier [7 ]
Strong, Joe [7 ]
Talavera, Sandra [1 ,5 ,11 ]
Verney, Steven P. [11 ,20 ]
Weisensel, Trinity [7 ]
Weiner, Michael W. [8 ,9 ,16 ,17 ]
Okonkwo, Ozioma C. [7 ]
机构
[1] Fordham Univ, Dept Psychol, Bronx, NY USA
[2] Fordham Univ, Dept Latin Amer, Bronx, NY USA
[3] Fordham Univ, Latino Studies Inst, Bronx, NY USA
[4] Fordham Univ, Dept African & African Amer Studies, Bronx, NY USA
[5] Icahn Sch Med Mt Sinai, Dept Neurol, New York, NY USA
[6] Calif State Univ, Dept Psychol, Northridge, CA USA
[7] Univ Wisconsin Madison, Wisconsin Alzheimers Dis Res Ctr, Sch Med & Publ Hlth, Dept Med, Madison, WI USA
[8] Northern Calif Inst Res & Educ NCIRE, San Francisco, CA USA
[9] VA Adv Imaging Res Ctr, Vet Affairs Med Ctr, San Francisco, CA USA
[10] Rush Univ, Med Ctr, Dept Neurol Sci, Chicago, IL USA
[11] Alzheimers Dis Neuroimaging Initiat, Community Sci Partnership Board CSPB, New York, NY USA
[12] Melanin Minded LLC, Milwaukee, WI USA
[13] Indiana Univ Sch Med, Indiana Alzheimers Dis Res Ctr, Indianapolis, IN USA
[14] Univ Texas Rio Grande Valley, Dept Neurosci, Sch Med, Rancho Viejo, TX USA
[15] Univ Calif Davis, Sch Med, Dept Neurol, Sacramento, CA USA
[16] Univ Calif San Francisco, Dept Psychiat & Behav Sci, San Francisco, CA USA
[17] Univ Calif San Francisco, Dept Radiol & Biomed Imaging, San Francisco, CA USA
[18] Univ Calif San Francisco, Sch Nursing, Dept Community Hlth Syst, San Francisco, CA USA
[19] Univ Calif San Francisco, Asian Amer Res Ctr Hlth ARCH, San Francisco, CA USA
[20] Univ New Mexico, Dept Psychol, Albuquerque, NM USA
基金
美国国家卫生研究院; 加拿大健康研究院;
关键词
Alzheimer's disease; cognitive aging; community-engaged research; cultural humility; dementia; diversity; external validity; generalizability; health disparities; health equity; inclusion science; inclusive participation; underrepresented populations; SACRAMENTO AREA LATINO; AFRICAN-AMERICANS; COGNITIVE IMPAIRMENT; OLDER-ADULTS; RECRUITMENT; PERFORMANCE; DEMENTIA; REGISTRY; PARTICIPATION; ASSOCIATIONS;
D O I
10.1002/alz.14242
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
INTRODUCTION: The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD-related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence-based, scalable culturally informed, community-engaged research (CI-CER) model and demonstrate its preliminary success in increasing URP enrollment. METHODS: URPs include ethnoculturally minoritized, lower education (<= 12 years), and rural populations. The CI-CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community-Science Partnership Board). RESULTS: As of April 2024, 60% of ADNI-4 new in-clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI-4's >= 50% URP representation goal for new enrollees but may not represent final enrollment. DISCUSSION: Findings show a CI-CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity.
引用
收藏
页码:8279 / 8293
页数:15
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