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.
Training materials are available for this module.

Essential documents

	Initial Visit (IVP)	Follow-up Visit (FVP)

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

English Spanish
	Initial Visit (IVP)	Follow-up Visit (FVP)

A3a: Record of Consent for Biologic Specimen Use
B3F: Supplemental UPDRS
B9F: Clinical PPA and bvFTD Features
C1F: Neuropsychological Battery Summary Scores

Means and standard deviations for the FTLD Module battery in cognitively normal participants — as of June 2020 (PDF) FTLD Module Worksheets for tests reported on Form C1F FTLD Module Worksheets with stimulus pictures Instructions for the FTLD Module neuropsychological tests
C2F: Social Norms Questionnaire
C3F: Social Behavior Observer Checklist
C4F: Behavioral Inhibition Scale — Co-participant questionnaire
C5F: Interpersonal Reactivity Index — Co-participant questionnaire
C6F: Revised Self-monitoring Scale — Co-participant questionnaire
E2F: Imaging Available
E3F: Imaging in Diagnosis
Z1X: Form Checklist

A3a: Registro de Consentimiento para Uso de Muestra Biológica
B3F: UPDRS Complementaira
B9F: Caracteristicas clinicas de la APP y DFTvc
C1F: Puntajes Sumarios de la Bateria Neuropsicologica

Worksheets alone, Spanish Stimulus Pictures, Spanish Worksheets with Stimulus Picture, Spanish
C2F: Cuestionario de Normas Sociales 1
C3F: Escala de Conducta Social por Observador
C4F: Escala de Inhibicion Conductual 1
C5F: Indice de Reactividad Personal — Cuestionario para el informante
C6F: Escala Revisada de Auto-Monitoreo 1 — Cuestionario para el Informante
E2F: Imágenes Disponibles
E3F: Imágenes en el Diagnóstico
Z1X: Lista de verificacion de formularios