Forms and documentation

Uniform Data Set (UDS)

The Uniform Data Set contains longitudinal data, collected since 2005 during standardized annual evaluations conducted at the NIA-funded Alzheimer’s Disease Research Centers (ADRCs) across the country. Participants in the study represent the entire Clinical Core enrollment of the ADRCs, with cognitive status ranging from demented to mild cognitive impairment to cognitively normal. A subset of UDS participants are also evaluated with one of the additional sets of diagnosis-specific data-collection forms, the FTLD Module or the LBD Module.

Essential documents

The 2012 and 2013 UDS v2 guides were previously recommended to researchers using NACC data. These files are still available to support researchers who are using NACC data sets cut before the introduction of the more comprehensive Researchers Data Dictionary (UDS-RDD), introduced in 2015.

Initial Visit
(IVP)
Follow-up Visit
(FVP)
Tel. Follow-up
(TFP)
Forms Packet, English   
Forms Packet, Spanish   
Coding Guidebook   
Data Element Dictionary   

Stand-alone forms

FormInstructionsDEDData Template
M1: Milestones form

This form is used to indicate a change in data collection or status of a participant, including death or discontinuation.

    

Individual forms

Initial Visit
(IVP)
Follow-up Visit
(FVP)
Tel. Follow-up
(TFP)
  • A1: Subject Demographics   
    A2: Informant Demographics   
    A3: Subject Family History   
    A4: Subject Medications   
    A5: Subject Health History   
    B1: Evaluation Form - Physical  
    B2: Evaluation Form - HIS and CVD  
    B3: Evaluation Form - UPDRS  
    B4: Global Staging - CDR® Dementia Staging Instrument Plus NACC FTLD Behavior & Language Domains (CDR® Plus NACC FTLD)   
    B5: Behavioral Assessment - NPI-Q   
    B6: Behavioral Assessment - GDS  
    B7: Functional Assessment - FAQ   
    B8: Evaluation - Physical / Neurological Exam Findings  
    B9: Clinician Judgment of Symptoms   
    C1: MMSE and Neuropsychological Battery*  
    D1: Clinician Diagnosis - Cognitive Status and Dementia   
    E1: Imaging / Labs   
    Z1: Form Checklist   
  • B5S: Behavioral Assessment - NPI-Q   
    B6S: Behavioral Assessment - GDS  
    B7S: Functional Assessment - FAQ   
    C1: MMSE and Neuropsychological Battery*  

* Due to copyright restrictions, the C1 neuropsychological tests and instructions are not available for public distribution. Copies of unmodified versions of these forms may be obtained directly from the appropriate publisher, as referenced in the UDS Coding Guidebook(s).

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NACC is funded by the National Institute on Aging (U01 AG016976) and located in the Department of Epidemiology at the University of Washington School of Public Health, Walter A. Kukull, Ph.D., Director. © 2021 University of Washington