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

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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.
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Keywords: Alzheimer disease; Alzheimer disease center; Lewy body disease; MCI; National Alzheimer’s Coordinating Center; frontotemporal degeneration

Document Type: Review Article

Affiliations: 1: 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 2: Department of Epidemiology, National Alzheimer’s Coordinating Center, University of Washington, Seattle, WA 3: Department of Neurology, Mayo Clinic, Rochester, MN 4: Department of Neurology, Keck School of Medicine, University of Southern California, Los Angeles, Los Angeles 5: Department of Neurosciences, University of California San Diego, La Jolla, CA 6: Departments of Psychiatry and Neurology, and Cognitive Neurology and Alzheimer’s Disease Center, Northwestern University Feinberg School of Medicine, Chicago, IL 7: Department of Neurology, University of Kentucky, Lexington, KY 8: Department of Medicine, University of Wisconsin School of Medicine and Public Health; Geriatric Research, Education and Clinical Center, Madison VA Hospital, Madison, WI 9: Department of Neurology, School of Medicine, University of Kansas, Kansas City, KS 10: Department of Neurology, School of Medicine, Oregon Health & Science University, Portland, OR 11: Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia 12: Department of Psychiatry, University of Pittsburgh School of Medicine, Department of Neurology, University of Pittsburgh School of Medicine, Mental Illness Research, Education, and Clinical Center, VA Pittsburgh Healthcare System, Pittsburgh, PA 13: Center for Biomedical Statistics, University of Washington, Seattle, WA 14: National Institute on Aging (retired), Bethesda, MD 15: Department of Neurology, Washington University School of Medicine, St. Louis, MO

Publication date: October 1, 2018

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