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

Mónica Rivera Mindt^{1

2

3}, Alyssa Arentoft⁴, Amanda T Calcetas¹, Vanessa A Guzman³, Hannatu Amaza⁵, Adeyinka Ajayi³, Miriam T Ashford^{6

7}, Omobolanle Ayo³, Lisa L Barnes^{8

9}, Alicia Camuy³, Catherine Conti^{6

7}, Adam Diaz^{6

7}, Bashir Easter^{9

10}, David J Gonzalez⁹, Yolanda Graham Dotson^{9

11}, Isabella Hoang⁵, Kaori Kubo Germano¹, Gladys E Maestre^{9

12}, Fabiola Magaña⁵, Oanh L Meyer^{9

13}, Melanie J Miller^{6

7}, Rachel Nosheny^{6

7

14

15}, Van M Ta Park^{9

16

17}, Shaniya Parkins³, Lisa Renier Thomas⁵, Joe Strong⁵, Sandra Talavera^{1

3

9}, Steven P Verney^{9

18}, Trinity Weisensel⁵, Michael W Weiner^{6

7

14

15}, Ozioma C Okonkwo⁵; Alzheimer's Disease Neuroimaging Initiative

Affiliations

¹ Department of Psychology, Fordham University, Bronx, New York, USA.
² Department of Latin American and Latino Studies Institute and Department of African and African American Studies, Fordham University, Bronx, New York, USA.
³ Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
⁴ Department of Psychology, California State University, Northridge, Northridge, California, USA.
⁵ Department of Medicine, Wisconsin Alzheimer's Disease Research Center, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Wisconsin, USA.
⁶ Northern California Institute for Research and Education (NCIRE), San Francisco, California, USA.
⁷ VA Advanced Imaging Research Center, Veterans Affairs Medical Center, San Francisco, California, USA.
⁸ Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA.
⁹ Community Science Partnership Board (CSPB), Alzheimer's Disease Neuroimaging Initiative, New York, New York, USA.
¹⁰ Melanin Minded LLC, Milwaukee, Wisconsin, USA.
¹¹ Indiana Alzheimer's Disease Research Center, School of Medicine, Indiana University, Indianapolis, Indiana, USA.
¹² Department of Neuroscience, University of Texas Rio Grande Valley School of Medicine, Rancho Viejo, Texas, USA.
¹³ Department of Neurology, School of Medicine, University of California Davis, Sacramento, California, USA.
¹⁴ Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, California, USA.
¹⁵ Department of Radiology and Biomedical Imaging, University of California San Francisco, San Francisco, California, USA.
¹⁶ Department of Community Health Systems, School of Nursing, University of California San Francisco, San Francisco, California, USA.
¹⁷ Asian American Research Center on Health (ARCH), University of California San Francisco, San Francisco, California, USA.
¹⁸ Department of Psychology, University of New Mexico, Albuquerque, New Mexico, USA.

PMID: 39440702
PMCID: PMC11667532
DOI: 10.1002/alz.14242

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

Mónica Rivera Mindt et al. Alzheimers Dement. 2024 Dec.

. 2024 Dec;20(12):8279-8293.

doi: 10.1002/alz.14242. Epub 2024 Oct 23.

Authors

Affiliations

¹ Department of Psychology, Fordham University, Bronx, New York, USA.
² Department of Latin American and Latino Studies Institute and Department of African and African American Studies, Fordham University, Bronx, New York, USA.
³ Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
⁴ Department of Psychology, California State University, Northridge, Northridge, California, USA.
⁵ Department of Medicine, Wisconsin Alzheimer's Disease Research Center, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, Wisconsin, USA.
⁶ Northern California Institute for Research and Education (NCIRE), San Francisco, California, USA.
⁷ VA Advanced Imaging Research Center, Veterans Affairs Medical Center, San Francisco, California, USA.
⁸ Department of Neurological Sciences, Rush University Medical Center, Chicago, Illinois, USA.
⁹ Community Science Partnership Board (CSPB), Alzheimer's Disease Neuroimaging Initiative, New York, New York, USA.
¹⁰ Melanin Minded LLC, Milwaukee, Wisconsin, USA.
¹¹ Indiana Alzheimer's Disease Research Center, School of Medicine, Indiana University, Indianapolis, Indiana, USA.
¹² Department of Neuroscience, University of Texas Rio Grande Valley School of Medicine, Rancho Viejo, Texas, USA.
¹³ Department of Neurology, School of Medicine, University of California Davis, Sacramento, California, USA.
¹⁴ Department of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, California, USA.
¹⁵ Department of Radiology and Biomedical Imaging, University of California San Francisco, San Francisco, California, USA.
¹⁶ Department of Community Health Systems, School of Nursing, University of California San Francisco, San Francisco, California, USA.
¹⁷ Asian American Research Center on Health (ARCH), University of California San Francisco, San Francisco, California, USA.
¹⁸ Department of Psychology, University of New Mexico, Albuquerque, New Mexico, USA.

PMID: 39440702
PMCID: PMC11667532
DOI: 10.1002/alz.14242

Abstract

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.

Keywords: 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.

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Conflict of interest statement

Please see submitted author ICJME disclosure forms. Author disclosures are available in the supporting information.

Figures

**FIGURE 1**
ADNI‐4 engagement core's organizational structure for implementation of the CI‐CER model. ADNI, Alzheimer's Disease Neuroimaging Initiative; CI‐CER, culturally informed, community‐engaged research; PET, positron emission tomography; SES, socioeconomic status; URP, underrepresented population.

See this image and copyright information in PMC

References

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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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Research Materials

Miscellaneous