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 (IVP)	Follow-up Visit (FVP)

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 (IVP)	Follow-up Visit (FVP)

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

Session for Clinicians: Supplemental Neurological Exam, bvFTD and PPA diagnoses Neuropsychological Battery Worksheets Neuropsychological Battery Worksheets with stimulus pictures Instructions for the FTLD Neuropsychological Battery
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