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.

The last update to the UDS (v3) was released in 2015. Since then, the AD/ADRD field has made significant progress making it critical to update the UDS once again. UDSv4 will introduce a form focused on social determinants of health (SDOH) as well as updated, more inclusive questions on gender identity, sexual orientation, and multi-racial and -ethnic identities 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 Spanish and Chinese translations of the UDS, and implementing electronic data capture (EDC) to improve accessibility for UDS participants.

UDSv4 will also advance the AD/ADRD field with a new form focused on AD/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.

UDS updates are critical for advancing the field, and we are honored to collaborate closely with the Clinical Task Force on this effort. All 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.

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 how to get involved

• 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

NIA, NACC, and the CTF have worked over the past several years to update the UDS forms from version 3 to version 4. The changes, which impact most of the UDS forms, are complete and have begun being piloted at ADRCs. This pilot is an excellent opportunity for sites to become familiar with the new UDSv4 forms and practice submitting data before it becomes a requirement in Fall 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 and the CTF will consider this feedback before the formal UDSv4 roll-out.

Learn more about the UDSv4 Pilot and how to get involved

• August 2024 Update
• June 2024 Update
• 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.