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.

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 (Link to the UDSv4 Pilot Landing Page). 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

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.

• 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

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

May 14, 2024 UDSv4 Virtual Clinical Training Workshop

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

• January 2024 Update
• December 2023 Update
• October 2023 Update
• June 2023 Update
• May 2023 Update
• October 2022 Update
• June 2022 Update
• February 2022 Update

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.

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.