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

Abstract

INTRODUCTIONThe 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.METHODSURPs 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).RESULTSAs 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.DISCUSSIONFindings 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.