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Down Syndrome Module

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.

file_save Revisions Log - Revisions made to the DS Module since implementation (October 2020)

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.
IVP
FVP

Coding Guidebook
The guidebooks provide detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references.
IVP
FVP

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.
IVP
FVP
 

Individual forms

 

Initial Visit (IVP)

Follow-up Visit (FVP)

A1D: Participant Health History
IVP
FVP

B1D: NTG — Early Detection Screen for Dementia
IVP
FVP

B2D: DLD Summary Page
IVP
FVP

C1D: Neuropsychological Battery Scores
IVP
FVP

D1D: Clinician Exam and Diagnosis
IVP
FVP

Z1D: Guidance for Down Syndrome Module Submission
IVP