Forms and documentation

Uniform Data Set (UDS)

The FTLD Module was implemented in 2012 and contains data collected on a subset of UDS participants. The Module is aimed at evaluating those suffering from or at risk for any of the forms of frontotemporal lobar degeneration.

Essential documents

Initial Visit
Follow-up Visit
Forms Packet

The full packet, containing all data collection forms. 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
Follow-up Visit
A3F: Family History: Affected Family Members  
A3aF: Record of Consent for Biologic Specimen Use  
B3F: Supplemental UPDRS  
B9F: Clinical PPA and bvFTD Features  
C1F: Neuropsychological Battery Summary Scores  
C2F: Social Norms Questionnaire  
C3F: Social Behavior Observer Checklist  
C4F: Behavioral Inhibition Scale — Informant Questionnaire  
C5F: Interpersonal Reactivity Index — Informant Questionnaire  
C6F: Revised Self-Monitoring Scale — Informant Questionnaire  
E2F: Imaging Available  
E3F: Imaging in Diagnosis  
Z1F: Form Checklist