Version 3 of the national Alzheimer's coordinating center's uniform data set

Lilah Besser, Walter Kukull, David S. Knopman, Helena Chui, Douglas Galasko, Sandra Weintraub, Gregory Jicha, Cynthia Carlsson, Jeffrey Burns, Joseph Quinn, Robert A. Sweet, Katya Rascovsky, Merilee Teylan, Duane Beekly, George Thomas, Mark Bollenbeck, Sarah Monsell, Charles Mock, Xiao Hua Zhou, Nicole ThomasElizabeth Robichaud, Margaret Dean, Janene Hubbard, Mary Jacka, Kristen Schwabe-Fry, Joylee Wu, Creighton Phelps, John C. Morris

Research output: Contribution to journalReview article

2 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)351-358
Number of pages8
JournalAlzheimer Disease and Associated Disorders
Volume32
Issue number4
DOIs
StatePublished - Jan 1 2018

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Advisory Committees
National Institute on Aging (U.S.)
Datasets
Research
Dementia
Consensus
Alzheimer Disease
History
Research Personnel

Keywords

  • Alzheimer disease
  • Alzheimer disease center
  • frontotemporal degeneration
  • Lewy body disease
  • MCI
  • National Alzheimer's Coordinating Center

ASJC Scopus subject areas

  • Clinical Psychology
  • Gerontology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health

Cite this

Besser, L., Kukull, W., Knopman, D. S., Chui, H., Galasko, D., Weintraub, S., ... Morris, J. C. (2018). Version 3 of the national Alzheimer's coordinating center's uniform data set. Alzheimer Disease and Associated Disorders, 32(4), 351-358. https://doi.org/10.1097/WAD.0000000000000279

Version 3 of the national Alzheimer's coordinating center's uniform data set. / Besser, Lilah; Kukull, Walter; Knopman, David S.; Chui, Helena; Galasko, Douglas; Weintraub, Sandra; Jicha, Gregory; Carlsson, Cynthia; Burns, Jeffrey; Quinn, Joseph; Sweet, Robert A.; Rascovsky, Katya; Teylan, Merilee; Beekly, Duane; Thomas, George; Bollenbeck, Mark; Monsell, Sarah; Mock, Charles; Zhou, Xiao Hua; Thomas, Nicole; Robichaud, Elizabeth; Dean, Margaret; Hubbard, Janene; Jacka, Mary; Schwabe-Fry, Kristen; Wu, Joylee; Phelps, Creighton; Morris, John C.

In: Alzheimer Disease and Associated Disorders, Vol. 32, No. 4, 01.01.2018, p. 351-358.

Research output: Contribution to journalReview article

Besser, L, Kukull, W, Knopman, DS, Chui, H, Galasko, D, Weintraub, S, Jicha, G, Carlsson, C, Burns, J, Quinn, J, Sweet, RA, Rascovsky, K, Teylan, M, Beekly, D, Thomas, G, Bollenbeck, M, Monsell, S, Mock, C, Zhou, XH, Thomas, N, Robichaud, E, Dean, M, Hubbard, J, Jacka, M, Schwabe-Fry, K, Wu, J, Phelps, C & Morris, JC 2018, 'Version 3 of the national Alzheimer's coordinating center's uniform data set', Alzheimer Disease and Associated Disorders, vol. 32, no. 4, pp. 351-358. https://doi.org/10.1097/WAD.0000000000000279
Besser, Lilah ; Kukull, Walter ; Knopman, David S. ; Chui, Helena ; Galasko, Douglas ; Weintraub, Sandra ; Jicha, Gregory ; Carlsson, Cynthia ; Burns, Jeffrey ; Quinn, Joseph ; Sweet, Robert A. ; Rascovsky, Katya ; Teylan, Merilee ; Beekly, Duane ; Thomas, George ; Bollenbeck, Mark ; Monsell, Sarah ; Mock, Charles ; Zhou, Xiao Hua ; Thomas, Nicole ; Robichaud, Elizabeth ; Dean, Margaret ; Hubbard, Janene ; Jacka, Mary ; Schwabe-Fry, Kristen ; Wu, Joylee ; Phelps, Creighton ; Morris, John C. / Version 3 of the national Alzheimer's coordinating center's uniform data set. In: Alzheimer Disease and Associated Disorders. 2018 ; Vol. 32, No. 4. pp. 351-358.
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AU - Kukull, Walter

AU - Knopman, David S.

AU - Chui, Helena

AU - Galasko, Douglas

AU - Weintraub, Sandra

AU - Jicha, Gregory

AU - Carlsson, Cynthia

AU - Burns, Jeffrey

AU - Quinn, Joseph

AU - Sweet, Robert A.

AU - Rascovsky, Katya

AU - Teylan, Merilee

AU - Beekly, Duane

AU - Thomas, George

AU - Bollenbeck, Mark

AU - Monsell, Sarah

AU - Mock, Charles

AU - Zhou, Xiao Hua

AU - Thomas, Nicole

AU - Robichaud, Elizabeth

AU - Dean, Margaret

AU - Hubbard, Janene

AU - Jacka, Mary

AU - Schwabe-Fry, Kristen

AU - Wu, Joylee

AU - Phelps, Creighton

AU - Morris, John C.

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