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

doi:10.1097/WAD.0000000000000279

Review

. 2018 Oct-Dec;32(4):351-358.

doi: 10.1097/WAD.0000000000000279.

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

Lilah Besser^{1

2}, Walter Kukull¹, David S Knopman³, Helena Chui⁴, Douglas Galasko⁵, Sandra Weintraub⁶, Gregory Jicha⁷, Cynthia Carlsson⁸, Jeffrey Burns⁹, Joseph Quinn¹⁰, Robert A Sweet¹¹, Katya Rascovsky^{12

13

14}, Merilee Teylan¹, Duane Beekly¹, George Thomas¹, Mark Bollenbeck¹, Sarah Monsell¹⁵, Charles Mock¹, Xiao Hua Zhou¹, Nicole Thomas¹, Elizabeth Robichaud¹, Margaret Dean¹, Janene Hubbard¹, Mary Jacka¹, Kristen Schwabe-Fry¹, Joylee Wu¹, Creighton Phelps¹⁶, John C Morris¹⁷; Neuropsychology Work Group, Directors, and Clinical Core leaders of the National Institute on Aging-funded US Alzheimer’s Disease Centers

Affiliations

¹ Department of Epidemiology, National Alzheimer's Coordinating Center, University of Washington, Seattle, WA.
² Institute for Healthy Aging and Lifespan Studies and School of Urban and Regional Planning, Florida Atlantic University, Boca Raton, FL.
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.
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.
¹³ Department of Neurology, University of Pittsburgh School of Medicine.
¹⁴ Mental Illness Research, Education, and Clinical Center, VA Pittsburgh Healthcare System, Pittsburgh, PA.
¹⁵ Center for Biomedical Statistics, University of Washington, Seattle, WA.
¹⁶ National Institute on Aging (retired), Bethesda, MD.
¹⁷ Department of Neurology, Washington University School of Medicine, St. Louis, MO.

PMID: 30376508
PMCID: PMC6249084
DOI: 10.1097/WAD.0000000000000279

Review

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

Lilah Besser et al. Alzheimer Dis Assoc Disord. 2018 Oct-Dec.

. 2018 Oct-Dec;32(4):351-358.

doi: 10.1097/WAD.0000000000000279.

Authors

Affiliations

¹ Department of Epidemiology, National Alzheimer's Coordinating Center, University of Washington, Seattle, WA.
² Institute for Healthy Aging and Lifespan Studies and School of Urban and Regional Planning, Florida Atlantic University, Boca Raton, FL.
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.
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.
¹³ Department of Neurology, University of Pittsburgh School of Medicine.
¹⁴ Mental Illness Research, Education, and Clinical Center, VA Pittsburgh Healthcare System, Pittsburgh, PA.
¹⁵ Center for Biomedical Statistics, University of Washington, Seattle, WA.
¹⁶ National Institute on Aging (retired), Bethesda, MD.
¹⁷ Department of Neurology, Washington University School of Medicine, St. Louis, MO.

PMID: 30376508
PMCID: PMC6249084
DOI: 10.1097/WAD.0000000000000279

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.

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References

1. Morris JC, Weintraub S, Chui HC, et al. The Uniform Data Set (UDS): clinical and cognitive variables and descriptive data from Alzheimer Disease Centers. Alzheimer Dis Assoc Disord. 2006;20:210–216. - PubMed
1. Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–198. - PubMed
1. Weintraub S, Besser L, Dodge HH, et al. Version 3 of the Alzheimer Disease Centers’ Neuropsychological Test Battery in the Uniform Data Set (UDS). Alzheimer Dis Assoc Disord. 2018;32:10–17. - PMC - PubMed
1. Monsell SE, Dodge HH, Zhou XH, et al. Results from the NACC Uniform Data Set Neuropsychological Battery Crosswalk Study. Alzheimer Dis Assoc Disord. 2016;30:134–139. - PMC - PubMed
1. Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7:280–292. - PMC - PubMed

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[1] Morris JC, Weintraub S, Chui HC, et al. The Uniform Data Set (UDS): clinical and cognitive variables and descriptive data from Alzheimer Disease Centers. Alzheimer Dis Assoc Disord. 2006;20:210–216. - PubMed

[2] Morris JC, Weintraub S, Chui HC, et al. The Uniform Data Set (UDS): clinical and cognitive variables and descriptive data from Alzheimer Disease Centers. Alzheimer Dis Assoc Disord. 2006;20:210–216. - PubMed

[3] Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–198. - PubMed

[4] Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–198. - PubMed

[5] Weintraub S, Besser L, Dodge HH, et al. Version 3 of the Alzheimer Disease Centers’ Neuropsychological Test Battery in the Uniform Data Set (UDS). Alzheimer Dis Assoc Disord. 2018;32:10–17. - PMC - PubMed

[6] Weintraub S, Besser L, Dodge HH, et al. Version 3 of the Alzheimer Disease Centers’ Neuropsychological Test Battery in the Uniform Data Set (UDS). Alzheimer Dis Assoc Disord. 2018;32:10–17. - PMC - PubMed

[7] Monsell SE, Dodge HH, Zhou XH, et al. Results from the NACC Uniform Data Set Neuropsychological Battery Crosswalk Study. Alzheimer Dis Assoc Disord. 2016;30:134–139. - PMC - PubMed

[8] Monsell SE, Dodge HH, Zhou XH, et al. Results from the NACC Uniform Data Set Neuropsychological Battery Crosswalk Study. Alzheimer Dis Assoc Disord. 2016;30:134–139. - PMC - PubMed

[9] Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7:280–292. - PMC - PubMed

[10] Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7:280–292. - PMC - PubMed

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

Affiliations

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

Authors

Affiliations

Abstract

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Abstract

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