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

^*Corresponding author for this work

Psychiatry and Behavioral Sciences

Research output: Contribution to journal › Review article › peer-review

295 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 (US)
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

Funding

Supported by NIA/NIH Grant U01 AG016976 (W.K.). Supported by the NIH (P50 AG16574) (D.S.K.). Supported by NIA grant AG05131(D.G.). Supported by NIH/NIA P30 AG028383 (G.J.). Research supported from the National Institutes of Health (P50AG033514, R01AG027161, R01AG011099, U19AG010483, R01AG049872, UF1AG051216, R01AG021155, R56AG037639, U2CAG057441, R01AG052324), the Department of Veterans Affairs (CSR&D I01 CX001261), the RECALL Foundation, the Alzheimer’s Association and Foundation for NIH, Janssen, and Lilly (C.C.). Receives research support from the National Institutes of Health (R01AG058557, R01AG053312, R01AG034614, R01AG03367, R01AG043962, P30AG035982, U10NS077356, UL1TR000001); received research support in the last 2 years for clinical trials from Lilly, Avid Radiopharmaceuticals, Toyama Chemical Company, Merck, Biogen, AbbVie, vTv Therapeutics, and Janssen (J.B.). Supported by NIA AG08017 (J.Q.). Supported by NIA AG 046499 and AG 017586 (K.R.). Receives research support from Eli Lilly/Avid Radiopharmaceuticals and is funded by NIH grants # P50AG005681; P01AG003991; P01AG026276; and UF01AG032438 (J.C.M.). The NACC database is funded by NIA/NIH Grant U01 AG016976. Additional acknowledgements to the Alzheimer’s Disease Centers are provided in Supplemental Digital Content 1 (http://links.lww.com/WAD/A207). The authors thankfully acknowledge all of the faculty and staff at the ADCs, UDS participants and co-participants, as well as the following sites for participating in the pilot study of the Spanish translation of UDS Version 3: University of California, San Diego; University of Southern California; Mount Sinai School of Medicine; Memory Clinic at the Institute on Aging, Pontificia Universidad Javeriana School of Medicine, Bogota, Colombia; Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia, Buenos Aires, Argentina; Instituto Nacional de Neurología y Neuro-cirugía “Manuel Velasco Suárez,” Mexico City, Mexico; Peru Young-Onset Dementia Network: Universidad Peruana Cayetano Heredia and Clínica Internacional. Lima, Peru.

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

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10.1097/WAD.0000000000000279

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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

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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 (US)",

volume = "32",

pages = "351--358",

journal = "Alzheimer Disease and Associated Disorders",

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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

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U2 - 10.1097/WAD.0000000000000279

DO - 10.1097/WAD.0000000000000279

M3 - Review article

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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

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