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
Form | Insttructions | DED | Data Template | |
M1: Milestones form |  | | | |
Individual forms
English
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* | | | |
Please contact NACC at [email protected] 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 | | | |
E1: Imaging / Labs | | | |
Z1: Form Checklist | | | |
Spanish
Initial Visit (IVP) | Follow-up Visit (FVP) | Tel. Follow-up (TFP) | |
B5S: Behavioral Assessment - NPI-Q | | | |
B6S: Behavioral Assessment - GDS | | | |
B7S: Functional Assessment - FAQ | | | |
C1: MMSE and Neuropsychological Battery* | | | |
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).