Down Syndrome Module Downloads
Latest Release: 1.0.0 (02/12/2026)
General download links
This section contains module-level file downloads for the Down Syndrome Module v1 as a whole, including: Project XML, Data Dictionary, Coding Guidebooks.
- REDCap XML [Last Updated 02/12/2026]
- REDCap Data Dictionary [Last Updated 02/12/2026]
- IVP Data Element Dictionary [Last Updated 02/12/2026]
- FVP Data Element Dictionary [Last Updated 02/12/2026]
- IVP Coding Guidebook
- FVP Coding Guidebook
Form-level Files
| Name | Initial Visit (IVP) PDF | Follow-up Visit (FVP) PDF | REDCap Instrument ZIP Files | Requires Form Header? |
|---|---|---|---|---|
| Form Header | Form Header | |||
| A1D: Participant Health History | A1D IVP | A1D FVP | A1D zip file | yes |
| B1D: NTG — Early Detection Screen for Dementia | B1D IVP | B1D FVP | B1D zip file | yes |
| B2D: DLD Summary Page | B2D IVP | B2D FVP | B2D zip file | yes |
| C1D: Neuropsychological Battery Scores | C1D IVP | C1D FVP | C1D zip file | yes |
| D1D: Clinician Exam and Diagnosis | D1D IVP | D1D FVP | D1D zip file | yes |
NOTE
There have been some minor changes to the DS Module header variable names to support the data ingest through the new NACC data platform. See the table below for details. The content in the DS module forms has not been changed otherwise.
Please reference the previous documentation for available resources.
Changes to DS Module Header Variables
| Change Summary | Form | Question | OLD Variable Name | NEW Variable Name |
|---|---|---|---|---|
| Remove "_DS" | Header | Packet Code | PACKET_DS | PACKET |
| Remove "_DS" | Header | Form version number | FORMVER_DS | FORMVER |
| Remove "_DS" | Header | Visit Date | VISITDATE_DS | VISITDATE |
| Remove "_" | A1D | A1D Participant Health History - Form date | FRMDATE_A1D | FRMDATEA1D |
| Remove "_" | A1D | A1D Participant Health History - Examiner's initials | INITIALS_A1D | INITIALSA1D |
| Remove "_" | A1D | A1D NTG — Early Detection Screen for Dementia - Form date | FRMDATE_B1D | FRMDATEB1D |
| Remove "_" | A1D | A1D NTG — Early Detection Screen for Dementia - Examiner's initials | INITIALS_B1D | INITIALSB1D |
| Remove "_" | A1D | A1D DLD Summary Page - Form date | FRMDATE_B2D | FRMDATEB2D |
| Remove "_" | A1D | A1D DLD Summary Page - Examiner's initials | INITIALS_B2D | INITIALSB2D |
| Remove "_" | C1D | C1D Neuropsychological Battery Scores - Form date | FRMDATE_C1D | FRMDATEC1D |
| Remove "_" | C1D | C1D Neuropsychological Battery Scores - Examiner's initials | INITIALS_C1D | INITIALSC1D |
| Remove "_" | D1D | D1D Clinician Exam and Diagnosis - Form date | FRMDATE_D1D | FRMDATED1D |
| Remove "_" | D1D | D1D Clinician Exam and Diagnosis - Examiner's initials | INITIALS_D1D | INITIALSD1D |
tip
If your center does not want to make the above listed variable name changes in your EDC system, please make sure to rename the CSV column headers to match the new variable names before you upload the file to the NACC data platform.
Submission Instructions
- Submitting Down Syndrome module data for UDSv3 visits
- Submitting Down Syndrome module data for UDSv4 visits [Coming Soon]