Zuelsdorff Megan, Abner Erin L, Balls-Berry Joyce E, Jicha Gregory A, Lanata Serggio, Maestre Gladys E, Rosselli Monica, Stites Shana D, Whitmer Rachel A, Wilkins Consuelo H, Barnes Lisa L
School of Nursing, University of Wisconsin-Madison, Madison, Wisconsin, USA.
Wisconsin Alzheimer's Disease Research Center, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USA.
Alzheimers Dement. 2025 May;21(5):e70279. doi: 10.1002/alz.70279.
The Alzheimer's Disease Research Centers (ADRCs) consortium represents a critical locus of research on Alzheimer's disease and related disorders (ADRD) prevention, diagnosis, and intervention. Through the National Alzheimer's Coordinating Center's (NACC) standardized protocol, the Uniform Data Set (UDS), ADRCs have collected rich, harmonizable clinical and cognitive data. However, the collection of social data has been sparse and Center specific, constraining ADRD science that addresses research priorities on social determinants of health (SDOH) and health equity. Capitalizing on the transition to a revised UDS version 4, an interdisciplinary committee representing 10 ADRCs reviewed the literature and instrumentation, ultimately creating a brief module covering multiple domains and levels of exposure required for mechanistic studies of SDOH and brain health. This article offers rationale, empirical support, and guidance for using the selected constructs: transportation security, financial security, social connectedness, health care experiences, and discrimination, as well as recommendations for next steps that each ADRC can take to maximize local and field-level progress. HIGHLIGHTS: Social determinants of health (SDOH) play a role in Alzheimer's disease and related dementias (ADRD) risk, diagnosis, care, and research participation. A new module adds SDOH to a revised Uniform Data Set (UDS) for the Alzheimer's Disease Research Center (ADRC) consortium. UDS SDOH include transportation, socioeconomic status, social relationships, health care, and discrimination. We provide evidence for causal SDOH associations with ADRD and guidelines for use. We include recommendations for next steps and expanding the impact of the SDOH module.
阿尔茨海默病研究中心（ADRCs）联盟是阿尔茨海默病及相关疾病（ADRD）预防、诊断和干预研究的关键场所。通过国家阿尔茨海默病协调中心（NACC）的标准化方案，即统一数据集（UDS），ADRCs收集了丰富、可协调的临床和认知数据。然而，社会数据的收集较为零散且因中心而异，这限制了ADRD科学在解决健康的社会决定因素（SDOH）和健康公平方面的研究重点。利用向修订后的UDS版本4的过渡，一个由10个ADRCs组成的跨学科委员会对文献和测量工具进行了审查，最终创建了一个简短的模块，涵盖了SDOH和大脑健康机制研究所需的多个领域和暴露水平。本文提供了使用所选结构（交通安全性、金融安全性、社会联系、医疗保健经历和歧视）的基本原理、实证支持和指导，以及每个ADRCs为最大限度地推动地方和领域层面进展可采取的后续步骤建议。要点：健康的社会决定因素（SDOH）在阿尔茨海默病和相关痴呆症（ADRD）的风险、诊断、护理和研究参与中发挥作用。一个新模块将SDOH添加到阿尔茨海默病研究中心（ADRC）联盟修订后的统一数据集（UDS）中。UDS中的SDOH包括交通、社会经济地位、社会关系、医疗保健和歧视。我们提供了SDOH与ADRD因果关联的证据及使用指南。我们包括后续步骤建议以及扩大SDOH模块的影响。
