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

IVP
FVP
TFP

Forms Packet, Spanish

IVP
FVP
TFP

Coding Guidebook

IVP
FVP
TFP

Data Element Dictionary

IVP
FVP
TFP

Stand-alone forms

 

Form

Insttructions

DED

Data Template

M1: Milestones form
This form is used to indicate a change in data collection or status of a participant, including death or discontinuation.

PDF
PDF
PDF
PDF

Individual forms

English

 

Initial Visit (IVP)

Follow-up Visit (FVP)

Tel. Follow-up (TFP)

A1: Subject Demographics

IVP
FVP
TFP

A2: Informant Demographics

IVP
FVP
TFP

A3: Subject Family History

IVP
FVP
TFP

A4: Subject Medications

IVP
FVP
TFP

A5: Subject Health History

IVP
FVP
TFP

B1: Evaluation Form - Physical

IVP
FVP
 

B2: Evaluation Form - HIS and CVD

IVP
FVP
 

B3: Evaluation Form - UPDRS

IVP
FVP
 

B4: Global Staging - CDR® Dementia Staging Instrument Plus NACC FTLD Behavior & Language Domains (CDR® Plus NACC FTLD)

IVP
FVP
TFP

B5: Behavioral Assessment - NPI-Q

IVP
FVP
TFP

B6: Behavioral Assessment - GDS

IVP
FVP
 

B7: Functional Assessment - FAQ

IVP
FVP
TFP

B8: Evaluation - Physical / Neurological Exam Findings

IVP
FVP
 

B9: Clinician Judgment of Symptoms

IVP
FVP
TFP

C1: MMSE and Neuropsychological Battery*

IVP
FVP
 

Please contact NACC at naccmail@uw.edu if you need Form C1 and the C1 battery. Scores should only be reported on Form C1 by ADRCs that have licensing agreements with the battery's test publishers.

D1: Clinician Diagnosis - Cognitive Status and Dementia

IVP
FVP
TFP

E1: Imaging / Labs

IVP
FVP
TFP

Z1: Form Checklist

IVP
FVP
TFP

 

Spanish

 

Initial Visit (IVP)

Follow-up Visit (FVP)

Tel. Follow-up (TFP)

B5S: Behavioral Assessment - NPI-Q

IVP
FVP
TFP

B6S: Behavioral Assessment - GDS

IVP
FVP
 

B7S: Functional Assessment - FAQ

IVP
FVP
TFP

C1: MMSE and Neuropsychological Battery*

IVP
FVP
 

Please note that for UDS v2, only those forms that were administered by communicating directly with the participant were translated into Spanish. The UDS v2 "Spanish Module" was not intended to be complete forms packet like the UDS v3 Spanish packets.

* 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).