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.
For clinicians planning to administer the UDS, training materials are available.

This overview of NACC data outlines UDS study population, collection methodology, and up-to-date participant statistics.

In response to COVID-19, telehealth data collection was expanded. See a summary of form changes and training materials.

To use NACC forms in research outside of the ADRC program, please submit a Permission Request.

The UDS is available in Spanish below along with usage instructions. Contact naccmail@uw.edu for information on a Mandarin translation of the IVP.

Essential documents

Please begin with the Researchers Data Dictionary for the UDS, which is intended as the first and primary resource for those analyzing NACC clinical and demographic data. See also this overview of the data available at NACC.

Initial Visit
(IVP)
Follow-up Visit
(FVP)
Tel. Initial Visit
(TIP)
Tel. Follow-up
(TFP)
Forms Packet, English

The full packet, containing all data collection forms in English. Alternatively, individual forms can be downloaded below.

    
Forms Packet, Spanish

The full packet, containing all data collection forms in Spanish. Alternatively, individual forms can be downloaded below.

    
Coding Guidebook

The guidebooks provide detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references.

    
Data Element Dictionary

In a compact format, the DEDs list all the variables and provide a detailed description, including data type, length of field, allowable codes, and information on skip patterns and blanks.

    
Data Template

Templates are designed to help ADRC Data Cores develop software for submitting UDS data to NACC via ASCII batch file submission.

    

Individual forms

Initial Visit
(IVP)
Follow-up Visit
(FVP)
Tel. Initial Visit
(TIP)
Tel. Follow-up
(TFP)

If you’re unable to find what you’re looking for, please don’t hesitate to contact us.

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University of Washington

NACC is funded by the National Institute on Aging (U24 AG072122) 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