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阿尔茨海默病神经影像学计划-4(ADNI-4)参与核心:一种促进大脑健康公平性的文化知情、社区参与研究(CI-CER)模式。

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.

作者信息

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

机构信息

Department of Psychology, Fordham University, Bronx, New York, USA.

Department of Latin American and Latino Studies Institute and Department of African and African American Studies, Fordham University, Bronx, New York, USA.

出版信息

Alzheimers Dement. 2024 Dec;20(12):8279-8293. doi: 10.1002/alz.14242. Epub 2024 Oct 23.

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.

摘要

引言

阿尔茨海默病神经影像学计划4(ADNI - 4)参与核心项目启动的目的是推进针对少数族裔人群(URP)的阿尔茨海默病(AD)及AD相关痴呆(ADRD)健康公平性研究。我们描述了基于证据、可扩展的文化知情、社区参与研究(CI - CER)模型,并展示了其在增加URP参与率方面取得的初步成功。

方法

URP包括在种族文化上处于少数群体、受教育程度较低(≤12年)的人群以及农村人口。CI - CER模型包括:(1)文化知情方法(例如,限制较少的纳入/排除标准、社会文化测量、经济补偿、结果披露、西班牙语能力工作组)和(2)包容性参与方法(例如,参与核心团队;枢纽站点;社区 - 科学合作委员会)。

结果

截至2024年4月,ADNI - 4新入组的临床参与者中有60%来自种族文化或教育方面的URP。这超过了ADNI - 4新参与者中URP占比≥50%的目标,但可能不代表最终参与情况。

讨论

研究结果表明,CI - CER模型提高了AD/ADRD临床研究中URP的参与率,对推进健康公平性的临床试验具有重要意义。

要点

阿尔茨海默病神经影像学计划4(ADNI - 4)采用文化知情、社区参与研究(CI - CER)方法。CI - CER方法可扩展且可持续,适用于广泛的多站点实施。ADNI - 4目前超过了其对少数族裔人群的纳入目标。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/61c3/11667532/593eceac1d5c/ALZ-20-8279-g001.jpg

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