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

Neuropsychological battery worksheets and instructions
D1D: Clinician Exam and Diagnosis
Z1D: Guidance for Down Syndrome Module Submission