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 Thomas; Elizabeth Robichaud; Margaret Dean; Janene Hubbard; Mary Jacka; Kristen Schwabe-Fry; Joylee Wu; Creighton Phelps; John C. Morris

doi:10.1097/WAD.0000000000000279

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 journal › Review article › peer-review

274 Scopus citations

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 language	English
Pages (from-to)	351-358
Number of pages	8
Journal	Alzheimer Disease and Associated Disorders
Volume	32
Issue number	4
DOIs	https://doi.org/10.1097/WAD.0000000000000279
State	Published - 2018

Bibliographical note

Publisher Copyright:
Copyright © 2018 The Author(s). Published by Wolters Kluwer Health, Inc.

Keywords

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

ASJC Scopus subject areas

Clinical Psychology
Gerontology
Geriatrics and Gerontology
Psychiatry and Mental health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1097/WAD.0000000000000279

Cite this

Besser, L., Kukull, W., Knopman, D. S., Chui, H., Galasko, D., Weintraub, S., Jicha, G., Carlsson, C., Burns, J., Quinn, J., Sweet, R. A., Rascovsky, K., Teylan, M., Beekly, D., Thomas, G., Bollenbeck, M., Monsell, S., Mock, C., Zhou, X. H., ... 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

@article{0c408dbb8db149788e253e51cbe709f8,

title = "Version 3 of the national Alzheimer's coordinating center's uniform data set",

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.",

keywords = "Alzheimer disease, Alzheimer disease center, Lewy body disease, MCI, National Alzheimer's Coordinating Center, frontotemporal degeneration",

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

note = "Publisher Copyright: Copyright {\textcopyright} 2018 The Author(s). Published by Wolters Kluwer Health, Inc.",

year = "2018",

doi = "10.1097/WAD.0000000000000279",

language = "English",

volume = "32",

pages = "351--358",

number = "4",

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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

TY - JOUR

T1 - Version 3 of the national Alzheimer's coordinating center's uniform data set

AU - Besser, Lilah

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.

PY - 2018

Y1 - 2018

N2 - 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.

AB - 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.

KW - Alzheimer disease

KW - Alzheimer disease center

KW - Lewy body disease

KW - MCI

KW - National Alzheimer's Coordinating Center

KW - frontotemporal degeneration

UR - http://www.scopus.com/inward/record.url?scp=85056156294&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85056156294&partnerID=8YFLogxK

U2 - 10.1097/WAD.0000000000000279

DO - 10.1097/WAD.0000000000000279

M3 - Review article

C2 - 30376508

AN - SCOPUS:85056156294

SN - 0893-0341

VL - 32

SP - 351

EP - 358

JO - Alzheimer Disease and Associated Disorders

JF - Alzheimer Disease and Associated Disorders

IS - 4

ER -

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

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

UN SDGs

Access to Document

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