Forms and documentation

Uniform Data Set (UDS)

The DS Module was implemented in 2020 and was designed to be used with a subset of UDS participants; specifically, adults with Down syndrome. Due to trisomy 21, adults with Down syndrome have an increased risk for and early onset of Alzheimer's disease.
Training materials are available for this module.

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.

In development

In development

Individual forms

Initial Visit
(IVP)
Follow-up Visit
(FVP)
A1D: Participant Health History  
B1D: NTG — Early Detection Screen for Dementia  
B2D: DLD Summary Page  
C1D: Neuropsychological Battery Scores  
D1D: Clinician Exam and Diagnosis