UDSv4 Updates

One of the largest and most comprehensive longitudinal, standardized, clinical and neuropathological datasets in the world!

About NACC's Uniform Data Set

Working in collaboration with the Alzheimer’s Disease Research Centers (ADRC) Program, currently comprised of 37 centers across the United States, NACC has built an extensive 50,000+ participant longitudinal database of standardized clinical and neuropathological research data that is freely available to all researchers. The NACC Uniform Data Set (UDS) includes rich multi-domain neurocognitive clinical and phenotypic data and robust criteria-based diagnoses. Centers enroll participants who are healthy, at risk, and with dementia symptoms and then research experts collect standardized longitudinal data through annual visits using research tools co-developed and provided by NACC.

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 (ADRC) Program 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.

UDSv4 Goals

Collaborating with the ADRC Program to Expand UDS Participant Diversity

NACC is collaborating with the ADRC Program to recruit more diverse participants into the NACC database and to provide new tools focused on collecting data on the social determinants of health. Capturing these factors is critical as they are linked to health disparities in ADRD. NACC is further enabling these investigations by providing validated and harmonized multilingual cognitive assessments (Spanish, Chinese) and tele-cognitive assessments, allowing for more extensive data capture in local communities of diverse populations. Additionally, NACC is collaborating with a recently formed Indigenous ADRD Advisory Group to support ADRCs in respectfully and successfully engaging indigenous populations in their region.

Updating the UDS Data Content - A Collaboration with the Clinical Task Force

NACC and the Clinical Task Force (CTF) recently completed updating the UDS data content and will soon pilot the new forms at a sub-set of ADRCs that choose to participate. Please visit this page for more information about the UDSv4 Forms Pilot. The UDS content has been updated to reflect new research and technology developments in the field and our evolving understanding of the best clinical practices.

Learn more about the UDSv4 Pilot and how to get involved

Co-Creating the new UDS: NACC Partners with Clinical Task Force (CTF)

UDS updates are critical for advancing the field, and we are honored 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 Dr. Allan Levey. NACC collaborates with the CTF on meeting agendas, setting strategic goals, and tracking deliverables. The CTF also includes a series of workgroups focused on specific specialties.

CTF Members

NACC Modernization in Support of UDSv4

This time around, the UDS update is more than just a content update. NACC is making several changes aimed at modernizing our systems and better serving the ADRC and ADRD research community. NACC is developing a series of modern UDS related tools and resources in collaboration with the ADRC community.
These will include:
  • A modern Electronic Data Capture system powered by REDCap
  • Transparent and accessible data quality checks
  • A cloud-based multimodal data integration and harmonization platform
  • A new advanced data search, visualization, and access interface for all ADRC data accessed via the NACC Data Front Door
UDSv4 Roadmap

Developing a Modern Electronic Data Capture System Powered by REDCap

NACC is actively updating its existing submission system to create a streamlined electronic data capture platform for the ADRC Program.

Learn More about NACC's EDC Development

The Electronic Data Capture Workgroup - A Collaboration with the ADRC Program

NACC is collaborating with the ADRC Electronic Data Capture (EDC) Workgroup to build a modern, streamlined, and scalable EDC System for UDSv4 that will effectively serve the needs of the community. The EDC Workgroup was launched by NACC in collaboration with the Data Core Steering Committee in January 2022. The EDC Workgroup is currently comprised of 97 members from across 33 ADRCs who are collaborating across three subgroups to co-develop REDCap forms, define requirements, and to develop documentation and training materials for UDSv4.

Learn more about the EDC workgroup and their progress here

Transparent and accessible data quality checks

NACC is creating a streamlined process for submitting and validating UDSv4 form data compared to the current system. NACC will post Excel files listing the data quality rules in a human-readable format to GitHub and will also post these data quality rules in JSON format in the same repository. Additionally, NACC will provide the Python code that will be used to run the data quality checks upon submission via a GitHub repository.

Building a Modern Cloud-based Multimodal Data Integration, Harmonization, and Sharing Platform

NACC is transitioning to a new modern cloud-based multimodal data integration, harmonization, and sharing platform that will not only accommodate UDSv4 forms but also effectively scale to collect and integrate new data streams to provide a robust long-term resource for the research community. All ADRC data streams will be connected to NACCIDs and searchable through the NACC Data Platform.

This new NACC Data Platform is described in more detail here

Supporting ADRCs through the transition to UDSv4

To aid ADRCs with the transition to UDSv4 and the new data submission options accompanying the forms update, the following resources will be provided:

  • Onboarding Checklist - step-by-step instructions with links to every resource ADRCs need to get started
  • Live Trainings / Webinars - NACC in collaboration with the CTF and EDC Workgroups will offer both live and recorded clinical and data manager training webinars
  • Office Hours - unstructured Zoom meeting times where ADRC members can join and ask questions of NACC's Technology, REDCap, and Research Teams
  • Moderated ADRC UDSv4 Community Forum (powered by Discourse) - amoderated forum for ADRCs and NACC to support sharing information, collaborating, and getting answers to your questions
  • UDSv4 FAQ - a living, changing list of the most common questions and answers will be available on Discourse and through a link on the NACC Website
  • Github Library - copies of REDCap forms, error checks, coding guidebooks, and other resources per form
  • REDCap SOPs - instructions and best practices, including action tags, calculated fields, cross-project piping, custom reporting, data access groups, data quality rules, data dictionaries, survey development and distribution, customization of user roles, how to use Crosswalks, JSON files, and XML, and more
  • UDSv3 to UDSv4 Crosswalks - data harmonization instructions between UDSv3 and UDSv4 for each form
  • REDCap Forms - two different resources: 1) the NACC-hosted REDCap environment, or 2) available for download as XML files from the Github Library

Keeping You in the Loop - UDSv4 Updates for the ADRC Community

We are committed to keeping the ADRC community in the loop throughout the transition to UDSv4. We will continue to update this page with new developments and to send out UDSv4 email updates with important news. We will also be collaborating with the CTF to provide webinars in UDSv4.

UDSv4 Webinars and Presentations

May 14, 2024 UDSv4 Virtual Clinical Training Workshop

Forms A1 & A2Presented by Clinical Task Force Member Dr. Greg Jicha of University of Kentucky ADRC.
Form A1aPresented by Clinical Task Force Members Dr. Lisa Barnes of Rush University ADRC and Dr. Megan Zuelsdorff of UW Madison ADRC.
Form A4Presented by Clinical Task Force Member Dr. Teresa Gomez-Isla of Massachusetts ADRC.
Form A4aPresented by Clinical Task Force Member Dr. Suzanne Schindler of Washington University ADRC.
Form A5/D2Presented by Clinical Task Force Member Dr. Aimee Pierce of OHSU ADRC.
Form B3Presented by Clinical Task Force Member Dr. Brad Boeve of Mayo Clinic ADRC.
Form B8Presented by Clinical Task Force Member Dr. Brad Boeve of Mayo Clinic ADRC.
Form B9Presented by Clinical Task Force Member Dr. Kostas Lyketsos of Johns Hopkins ADRC.
Form C2/C2TPresented by Clinical Task Force Members Dr. Lisa Barnes of Rush University ADRC and Dr. Andy Saykin of Indiana ADRC.
Form D1aPresented by Clinical Task Force Members Dr. Jeff Burns of Kansas University ADRC, Dr. Andy Saykin of Indiana ADRC, and Dr. Kostas Lyketsos of Johns Hopkins ADRC.
Form D1bPresented by Clinical Task Force Member Dr. Jeff Burns of Kansas University ADRC.

March 2024 Operationalizing "Impaired, not MCI" in UDSv4 Webinar

This hour-long webinar addressed operationalizing "Impaired, not MCI" vs MCI in the UDSv4. We opened with an overview of the item on UDSv4 Form D1a. Each speaker gave a case presentation, with ample time at the end for discussion and audience Q&A. This webinar was hosted by NACC and the ADRC Clinical Core Steering Committee as a part of our UDSv4 Webinar Series. Watch here

February 2024 UDSv4 Cognitive Task Force Webinar

Presenter Dr. Kostas Lyketsos uses a case-based approach to ratings of neuropsychiatric symptoms and mild behavioral impairment on Form D1a and related forms. Background to the concept of MBI and its importance as an early symptom of dementia is also shared. Watch here

Email Updates

UDSv4 Development Timeline

The Alzheimer’s Disease and Research Centers (ADRCs) will have opportunities to review UDSv4 forms and documentation and provide feedback via the UDSv4 Pilot (see this page for more information). The current anticipated UDSv4 timeline is below.
UDSv4 Development Timeline

Preview UDSv4 Forms

As NACC and our partners are finalizing the content and supporting infrastructure for UDSv4, we are making forms and documentation available early to enable those collecting and using UDS data to start preparations for the new form data. NACC and the CTF are launching the UDSv4 Pilot in order to identify any improvements that are needed in the UDSv4 guidance documentation, and the final versions will be available once this pilot concludes to align with the UDSv4 Implementation Timeline. Please see this page for more information about the UDSv4 Pilot.

FormForm NameCTF StatusPDF
A1Participant DemographicsApprovedFormA1-Preview-April2024.pdf
A1aSocial Determinants of HealthApprovedFormA1a-Preview-April2024.pdf
A2Co-Participant DemographicsApprovedFormA2-Preview-April2024.pdf
A3Participant Family HistoryApprovedFormA3-Preview-April2024.pdf
A4Participant MedicationsApprovedFormA4-Preview-April2024.pdf
A4aAD-Specific Drug TreatmentApprovedFormA4a-Preview-April2024.pdf
A5/D2Participant Health HistoryApprovedFormA5D2-Preview-April2024.pdf
B1Evaluation Form: PhysicalApprovedFormB1-Preview-April2024.pdf
B4Global Staging-CDR: Clinical Dementia RatingApprovedFormB4-Preview-April2024.pdf
B5Behavioral Assessment: NPI-QApprovedFormB5-Preview-April2024.pdf
B6Behavioral Assessment: GDSApprovedFormB6-Preview-April2024.pdf
B7Functional Assessment: FASApprovedFormB7-Preview-April2024.pdf
B8Evaluation Form: Neurological Examination FindingsApprovedFormB8-Preview-April2024.pdf
B9Clinical Judgement of SymptomsApprovedFormB9-Preview-April2024.pdf
C2Neuropsychological Battery Test ScoresApprovedFormC2-Preview-April2024.pdf
C2 WorksheetsC2 WorksheetsApprovedFormC2Worksheets-Preview-April2024.pdf
C2TNeuropsychological Battery Test ScoresApprovedFormC2T-Preview-April2024.pdf
C2T WorksheetsC2T WorksheetsApprovedFormC2TWorksheets-Preview-May2024.pdf
D1aClinical DiagnosisApprovedFormD1a-Preview-April2024.pdf
D1bBiomarker and Etiological DiagnosisApprovedFormD1b-Preview-April2024.pdf

UDSv4 Pilot

The National Institute on Aging (NIA), the National Alzheimer’s Coordinating Center (NACC), and the Alzheimer’s Disease Research Centers (ADRC) Clinical Task Force (CTF) have worked over the past several years to update the Uniform Data Set (UDS) forms from version 3 to version 4. The changes, which impact most of the UDS forms, are complete and will be piloted at ADRCs beginning in May 2024. This pilot will be an excellent opportunity for sites to become familiar with the new UDSv4 forms and practice submitting data before it becomes a requirement in the Fall of 2024. In addition, pilot sites can provide valuable feedback regarding the Coding Guidebooks, which are the instruction manuals for clinicians and testers administering the updated forms. NACC will incorporate the feedback into the formal UDSv4 roll-out. For more information about the UDSv4 Pilot, please visit this page.