UDSv4 Updates
- About NACC's Uniform Data Set
- NEWIntroducing Version 4 of the Uniform Data Set (UDSv4)!
- Collaborating with the ADRC Program to Expand UDS Participant Diversity
- Updating the UDS Data Content - A Collaboration with the Clinical Task Force
- NACC Modernization in Support of UDSv4
- Building an Integrated Pipeline and Repository for a Growing Set of Data Streams
- Expanded Data Search, Visualization, and Access: The Data Front Door (DFD)
- Keeping You in the Loop - UDSv4 Updates for the ADRC Community
- Preview UDSv4 Forms
About NACC's Uniform Data Set
Introducing Version 4 of the Uniform Data Set (UDSv4)
The UDS was introduced in 2005 to standardize longitudinal neurocognitive data collection across NIA’s Alzheimer's Disease Research Centers Program (ADRC) currently comprised of 37 centers. NACC convenes a Clinical Task Force, comprised of leading dementia experts from across the US every few years to develop a new version of the UDS that is aligned with important scientific advances in Alzheimer's Disease and Related Dementia (ADRD) research, detection, and care.
UDSv4 will introduce a form focused on social determinants of health (SDOH) as well as updated, more inclusive questions on gender, sexual orientation, and multi-racial identity which will enable researchers to explore new and critical questions related to diversity, equity and inclusion (DEI) research. NACC and the CTF strive to foster inclusion with these questions as well as promoting best practices for engaging indigenous communities across the ADRCs, providing the UDS in Spanish and Chinese translations, and implementing electronic data capture (EDC) to improve accessibility for UDS participants.
UDSv4 will also advance the ADRD field with a new form focused on ADRD-disease modifying drugs as well as new concepts throughout the UDS including subjective cognitive decline, mild behavioral impairment, and a verbal learning test to assess new cognitive domains.
Collaborating with the ADRC Program to Expand UDS Participant Diversity
Updating the UDS Data Content - A Collaboration with the Clinical Task Force
Collaboration with the Clinical Task Force
UDS updates are critical for advancing the field and we are honored to have the opportunity to collaborate closely with the Clinical Task Force on this effort. All of this work is happening under the leadership of and in close collaboration with the Clinical Task Force led by Allan Levey. NACC collaborates with the CTF on meeting agendas, setting strategic goals, and tracking deliverables. The CTF also encompasses a series of workgroups that are focused on specific specialties.
Roadmap for updating UDS content
The CTF incorporates the latest scientific concepts and clinical concepts in ADRD into the new version of the UDS. The committee is comprised of ADRD experts and consults with content experts in SDOH and other fields to produce the latest version of the UDS represented by the Roadmap below.
NACC Modernization in Support of UDSv4
- A new electronic submission system
- A pipeline and repository to accommodate additional data integrations
- A new data search, visualization, and access interface for all ADRC data
Developing a Modern Data Submission System Powered by REDCap
Why REDCap?
The Electronic Data Capture Workgroup - A Collaboration with the ADRC Program
Building an Integrated Pipeline and Repository for a Growing Set of Data Streams
New and Expanded Data Streams
Expanded Data Search, Visualization, and Access: The Data Front Door (DFD)
One-Stop-Shop for ADRC Data
NACC is making progress on developing the Data Front Door, a one-stop-shop for all ADRC data for all audiences that access Alzheimer’s research datasets. This tool will be freely accessible to researchers around the world via the NACC Data Platform and will allow for data sharing via Quick Access Files, an innovative cohort selection tool and the SCAN Public Dashboard.
Progress and Goals
NACC has collaborated closely with NCRAD, NIAGADS, SCAN, ADRCs, and ADRD researchers to begin to define requirements for the Data Front Door cohort selection tool and is planning to hold focus groups and conduct prototype testing to gather additional input from stakeholders and iteratively improve design features. This too will eventually provide advanced cohort data discovery, analytics, and even machine learning capabilities to data.
Get involved with the Data Front Door
Keeping You in the Loop - UDSv4 Updates for the ADRC Community
UDSv4 Webinars and Presentations
May 4, 2024 UDSv4 Virtual Clinical Training Workshop
March 2024 Operationalizing "Impaired, not MCI" in UDSv4 Webinar
February 2024 UDSv4 Cognitive Task Force Webinar
Fall 2023 ADRC Meeting NACC Session
June 3, 2022 CTF/NACC UDSv4 Webinar
ADRC 2022 Spring Meeting - NACC Director's Session Presentation
Email Updates
- January 2024 Update
- December 2023 Update
- October 2023 Update
- June 2023 Update
- May 2023 Update
- October 2022 Update
- June 2022 Update
- February 2022 Update
UDSv4 Development Timeline
Preview UDSv4 Forms
Form | Form Name | CTF Status | |
---|---|---|---|
A1 | Participant Demographics | Approved | FormA1-Preview-April2024.pdf |
A1a | Social Determinants of Health | Approved | FormA1a-Preview-April2024.pdf |
A2 | Co-Participant Demographics | Approved | FormA2-Preview-April2024.pdf |
A3 | Participant Family History | Approved | FormA3-Preview-April2024.pdf |
A4 | Participant Medications | Approved | FormA4-Preview-April2024.pdf |
A4a | AD-Specific Drug Treatment | Approved | FormA4a-Preview-April2024.pdf |
A5/D2 | Participant Health History | Approved | FormA5D2-Preview-April2024.pdf |
B1 | Evaluation Form: Physical | Approved | FormB1-Preview-April2024.pdf |
B3 | UPDRS-Parkinson's | Approved | FormB3-Preview-April2024.pdf |
B4 | Global Staging-CDR: Clinical Dementia Rating | Approved | FormB4-Preview-April2024.pdf |
B5 | Behavioral Assessment: NPI-Q | Approved | FormB5-Preview-April2024.pdf |
B6 | Behavioral Assessment: GDS | Approved | FormB6-Preview-April2024.pdf |
B7 | Functional Assessment: FAS | Approved | FormB7-Preview-April2024.pdf |
B8 | Evaluation Form: Neurological Examination Findings | Approved | FormB8-Preview-April2024.pdf |
B9 | Clinical Judgement of Symptoms | Approved | FormB9-Preview-April2024.pdf |
C2 | Neuropsychological Battery Test Scores | Approved | FormC2-Preview-April2024.pdf |
C2T | Neuropsychological Battery Test Scores | Approved | FormC2T-Preview-April2024.pdf |
D1a | Clinical Diagnosis | Approved | FormD1a-Preview-April2024.pdf |
D1b | Biomarker and Etiological Diagnosis | Approved | FormD1b-Preview-April2024.pdf |
Z1X | Checklist | Pending Content |