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The Alzheimers Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core: A culturally informed, community-engaged research (CI-CER) model to advance brain health equity.
- Rivera Mindt, Mónica;
- Arentoft, Alyssa;
- Calcetas, Amanda;
- Guzman, Vanessa;
- Amaza, Hannatu;
- Ajayi, Adeyinka;
- Ashford, Miriam;
- Ayo, Omobolanle;
- Barnes, Lisa;
- Camuy, Alicia;
- Conti, Catherine;
- Diaz, Adam;
- Easter, Bashir;
- Gonzalez, David;
- Dotson, Yolanda;
- Hoang, Isabella;
- Germano, Kaori;
- Maestre, Gladys;
- Magaña, Fabiola;
- Meyer, Oanh;
- Miller, Melanie;
- Nosheny, Rachel;
- Park, Van;
- Parkins, Shaniya;
- Thomas, Lisa;
- Strong, Joe;
- Talavera, Sandra;
- Verney, Steven;
- Weisensel, Trinity;
- Weiner, Michael;
- Okonkwo, Ozioma
- et al.
Published Web Location
https://doi.org/10.1002/alz.14242Abstract
INTRODUCTION: The Alzheimers Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core was launched to advance Alzheimers 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-4s ≥ 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 Alzheimers 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.
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