Department of Epidemiology, National Alzheimer's Coordinating Center, University of Washington, Seattle, WA.
Institute for Healthy Aging and Lifespan Studies and School of Urban and Regional Planning, Florida Atlantic University, Boca Raton, FL.
Alzheimer Dis Assoc Disord. 2018 Oct-Dec;32(4):351-358. doi: 10.1097/WAD.0000000000000279.
INTRODUCTION: In 2015, the US Alzheimer's Disease Centers (ADC) implemented Version 3 of the Uniform Data Set (UDS). This paper describes the history of Version 3 development and the UDS data that are freely available to researchers. METHODS: UDS Version 3 was developed after years of coordination between the National Institute on Aging-appointed Clinical Task Force (CTF), clinicians from ∼30 ADCs, and the National Alzheimer's Coordinating Center (NACC). The CTF recognized the need for updates to align with the state of the science in dementia research, while being flexible to the diverse needs and diseases studied at the ADCs. Version 3 also developed a nonproprietary neuropsychological battery. RESULTS: This paper focuses on the substantial Version 3 changes to the UDS forms related to clinical diagnosis and characterization of clinical symptoms to match updated consensus-based diagnostic criteria. Between March 2015 and March 2018, 4820 participants were enrolled using UDS Version 3. Longitudinal data were available for 25,337 of the 37,568 total participants using all UDS versions. DISCUSSION: The results from utilization of the UDS highlight the possibility for numerous research institutions to successfully collaborate, produce, and use standardized data collection instruments for over a decade.
简介:2015 年,美国阿尔茨海默病中心(ADC)实施了统一数据集(UDS)第 3 版。本文描述了第 3 版的开发历史以及可供研究人员免费使用的 UDS 数据。
方法:UDS 第 3 版是在国家老龄化研究所任命的临床工作组(CTF)、来自约 30 个 ADC 的临床医生以及国家阿尔茨海默病协调中心(NACC)多年协调之后开发的。CTF 认识到需要更新,以与痴呆症研究的科学现状保持一致,同时灵活适应 ADC 研究的不同需求和疾病。第 3 版还开发了一个非专利性的神经心理学电池。
结果:本文重点介绍了 UDS 表单在临床诊断和临床症状特征方面的重大第 3 版变更,以匹配基于共识的更新诊断标准。2015 年 3 月至 2018 年 3 月,使用 UDS 第 3 版共招募了 4820 名参与者。使用所有 UDS 版本,共有 37568 名参与者中的 25337 名参与者提供了纵向数据。
讨论:UDS 的使用结果表明,许多研究机构可以成功合作,制作和使用标准化的数据收集工具超过十年。
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