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

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 informe...

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Veröffentlicht in:Alzheimer's & dementia 2024-12, Vol.20 (12), p.8279-8293
Hauptverfasser: Rivera Mindt, Mónica, Arentoft, Alyssa, Calcetas, Amanda T., Guzman, Vanessa A., Amaza, Hannatu, Ajayi, Adeyinka, Ashford, Miriam T., Ayo, Omobolanle, Barnes, Lisa L., Camuy, Alicia, Conti, Catherine, Diaz, Adam, Easter, Bashir, Gonzalez, David J., Dotson, Yolanda Graham, Hoang, Isabella, Germano, Kaori Kubo, Maestre, Gladys E., Magaña, Fabiola, Meyer, Oanh L., Miller, Melanie J., Nosheny, Rachel, Park, Van M. Ta, Parkins, Shaniya, Thomas, Lisa Renier, Strong, Joe, Talavera, Sandra, Verney, Steven P., Weisensel, Trinity, Weiner, Michael W., Okonkwo, Ozioma C.
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Sprache:eng
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Zusammenfassung: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. Highlights The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) uses a culturally informed, community‐engaged research (CI‐CER) approach. The CI‐CER approach is scalable and sustainable for broad, multisite implementation. ADNI‐4 is currently exceeding its inclusion goals for underrepresented populations.
ISSN:1552-5260
1552-5279
1552-5279
DOI:10.1002/alz.14242