Community-engaged efforts to increase retention of Black American online registry participants

IF 4.9 Q1 CLINICAL NEUROLOGY

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Pub Date : 2025-05-08 DOI:10.1002/trc2.70046

Miriam T. Ashford, Anna Aaronson, Danqi Zhu, Xinyue Deng, Sandhya Kannan, Catherine Conti, Roxanne Alaniz, Jennefer Sorce, Carole Cypress, Derek Flenniken, Monica Camacho, Juliet Fockler, Diana Truran, R. Scott Mackin, Carl Hill, Michael W. Weiner, Desiree Byrd, Robert W. Turner II, Heining Cham, Monica Rivera Mindt, Rachel L. Nosheny

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引用次数: 0

Abstract

INTRODUCTION

Many longitudinal Alzheimer's disease studies fail to retain Black American adults once enrolled. This limits the generalizability of research findings.

METHODS

The Community-Engaged Digital Alzheimer's Research (CEDAR) study developed digital, culturally-informed, community-engaged efforts to increase longitudinal registry task completion of Black American Brain Health Registry (BHR) participants. Difference-in-differences analysis was conducted to compare longitudinal registry task completion rates within groups (before vs. after CEDAR referral) and between groups (enrolled in CEDAR vs. not enrolled).

RESULTS

Of 3888 invited Black American BHR participants, 420 (10.8%) enrolled in CEDAR. For CEDAR participants, we found significant increases in enrollment rate into referral studies and BHR timepoint completion rate after enrollment into CEDAR. Compared to those not enrolled, CEDAR participants had higher rates of: enrollment in referral studies, timepoint completion, initial questionnaire completion, and neuropsychological test completion.

DISCUSSION

The results provide preliminary evidence that CEDAR's culturally-informed, community-engaged research efforts were effective at improving engagement of Black American adults in an online longitudinal study. This is evidenced by increased registry engagement before and after enrollment and in comparison to Black American BHR participants not enrolled in CEDAR. These results need to be interpreted cautiously due to selection biases. This strategy can be adapted to other studies and settings.

Highlights

CEDAR is an online AD/ADRD registry engagement intervention for Black participants.
The intervention is community-engaged, digital, culturally-informed, and multifaceted.
Engagement rates increased before versus during the intervention for enrollees.
Engagement rates decreased over the same time period for non-enrolled participants.
Results need to be interpreted with caution due to selection biases.

Abstract Image

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社区参与的努力增加了美国黑人在线注册参与者的留存率

许多阿尔茨海默病的纵向研究未能保留美国黑人成年人一旦登记。这限制了研究结果的普遍性。方法社区参与的数字化阿尔茨海默病研究（CEDAR）研究开发了数字化、文化知情、社区参与的努力，以提高美国黑人脑健康登记（BHR）参与者的纵向登记任务完成度。采用差异中差异分析比较组内（转诊前与转诊后）和组间（入组与未入组）的纵向登记任务完成率。结果在3888名受邀的美国黑人BHR参与者中，420名（10.8%）参加了CEDAR。对于CEDAR参与者，我们发现入组后转诊研究的入组率和BHR时间点完成率显著增加。与未入组的受试者相比，CEDAR参与者的转诊研究入组率、时间点完成率、初始问卷完成率和神经心理测试完成率更高。讨论结果提供了初步证据，表明雪松大学的文化知情、社区参与的研究工作在提高美国黑人成年人在在线纵向研究中的参与度方面是有效的。与未参加CEDAR的美国黑人BHR参与者相比，在入组前后注册参与度都有所增加，这证明了这一点。由于选择偏差，这些结果需要谨慎解释。这一策略可以适用于其他研究和环境。CEDAR是针对黑人参与者的在线AD/ADRD注册参与干预。这种干预是社区参与的、数字化的、了解文化的和多方面的。与干预期间相比，参与者的参与率在干预前有所增加。在同一时期，未注册参与者的参与率有所下降。由于选择偏差，结果需要谨慎解释。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Medicine-Psychiatry and Mental Health

CiteScore

10.10

自引率

2.10%

发文量

134

审稿时长

10 weeks

期刊介绍： Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.