Version 3 of the National Alzheimer's Coordinating Center's Uniform Data Set

被引:314
作者
Besser, Lilah [1 ,2 ,3 ]
Kukull, Walter [1 ]
Knopman, David S. [4 ]
Chui, Helena [5 ]
Galasko, Douglas [6 ]
Weintraub, Sandra [7 ,8 ,9 ]
Jicha, Gregory [10 ]
Carlsson, Cynthia [11 ,12 ]
Burns, Jeffrey [13 ]
Quinn, Joseph [14 ]
Sweet, Robert A. [15 ]
Rascovsky, Katya [16 ,17 ,18 ]
Teylan, Merilee [1 ]
Beekly, Duane [1 ]
Thomas, George [1 ]
Bollenbeck, Mark [1 ]
Monsell, Sarah [19 ]
Mock, Charles [1 ]
Zhou, Xiao Hua [1 ]
Thomas, Nicole [1 ]
Robichaud, Elizabeth [1 ]
Dean, Margaret [1 ]
Hubbard, Janene [1 ]
Jacka, Mary [1 ]
Schwabe-Fry, Kristen [1 ]
Wu, Joylee [1 ]
Phelps, Creighton [20 ]
Morris, John C. [21 ]
机构
[1] Univ Washington, Dept Epidemiol, Natl Alzheimers Coordinating Ctr, Seattle, WA USA
[2] Florida Atlantic Univ, Inst Hlth Aging & Lifespan Studies, Boca Raton, FL 33431 USA
[3] Florida Atlantic Univ, Sch Urban & Reg Planning, Boca Raton, FL 33431 USA
[4] Mayo Clin, Dept Neurol, Rochester, MN USA
[5] Univ Southern Calif, Keck Sch Med, Dept Neurol, Los Angeles, CA USA
[6] Univ Calif San Diego, Dept Neurosci, La Jolla, CA 92093 USA
[7] Northwestern Univ, Dept Psychiat & Neurol, Feinberg Sch Med, Chicago, IL USA
[8] Northwestern Univ, Dept Cognit Neurol, Feinberg Sch Med, Chicago, IL USA
[9] Northwestern Univ, Alzheimers Dis Ctr, Feinberg Sch Med, Chicago, IL USA
[10] Univ Kentucky, Dept Neurol, Lexington, KY 40536 USA
[11] Univ Wisconsin, Sch Med & Publ Hlth, Dept Med, Madison, WI USA
[12] Madison VA Hosp, Geriatr Res Educ & Clin Ctr, Madison, WI USA
[13] Univ Kansas, Dept Neurol, Sch Med, Kansas City, KS USA
[14] Oregon Hlth & Sci Univ, Sch Med, Dept Neurol, Portland, OR 97201 USA
[15] Univ Penn, Dept Neurol, Perelman Sch Med, Philadelphia, PA 19104 USA
[16] Univ Pittsburgh, Sch Med, Dept Psychiat, Pittsburgh, PA USA
[17] Univ Pittsburgh, Sch Med, Dept Neurol, Pittsburgh, PA 15261 USA
[18] VA Pittsburgh Healthcare Syst, Mental Illness Res Educ & Clin Ctr, Pittsburgh, PA 15261 USA
[19] Univ Washington, Ctr Biomed Stat, Seattle, WA 98195 USA
[20] NIA, Bethesda, MD 20892 USA
[21] Washington Univ, Sch Med, Dept Neurol, St Louis, MO 63110 USA
基金
美国国家卫生研究院;
关键词
Alzheimer disease center; National Alzheimer's Coordinating Center; Alzheimer disease; Lewy body disease; frontotemporal degeneration; MCI; ASSOCIATION WORKGROUPS; DIAGNOSTIC GUIDELINES; DISEASE; RECOMMENDATIONS; INSTITUTE; DEMENTIA; BATTERY;
D O I
10.1097/WAD.0000000000000279
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
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 similar to 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.
引用
收藏
页码:351 / 358
页数:8
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