About NACC's Uniform Data Set
The NACC Uniform Data Set (UDS) is one of the world’s largest and most comprehensive standardized, longitudinal datasets on Alzheimer’s disease and related dementias. Since 2005, it has provided gold-standard neurocognitive, clinical, and phenotypic data, including robust criteria-based diagnoses, collected annually from participants ranging from healthy individuals to those with dementia symptoms.
Released in 2025, UDSv4 reflects the latest scientific advances in AD/ADRD research, detection, and care. Developed in partnership with the Clinical Task Force, the new version expands and modernizes data collection to better capture emerging concepts and support discovery across the ADRC Program. With UDSv4 NACC and the CTF made many improvements to the UDS, including:
- A new form focused on social determinants of health (SDOH)
- Updated demographic questions to better capture participant self-identification and backgrounds
- Best practices for engaging local and community-based groups across the ADRCs
- Spanish and Chinese translations of the UDS
- Improved accessibility for UDS participants via electronic data capture (EDC)
- A new form focused on AD/ADRD-disease modifying drugs
- New concepts throughout the UDS, including subjective cognitive decline, mild behavioral impairment, and a verbal learning test to assess new cognitive domains
NACC's Uniform Data Set is one of the largest and most comprehensive longitudinal, standardized, clinical and neuropathological datasets in the world!
Find UDSv4 Forms and Documentation
Get an overview of available UDSv4 Resources and learn more about UDSv4 data collection and submission options and resources
Modernized UDSv4 Tools
The UDSv4 update is more than just a content update. NACC made several changes aimed at modernizing our systems to better serve the AD/ADRD research community, including:
- An Electronic Data Capture System (EDCS) 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
A Modern EDCS Powered by REDCap
NACC updated its existing submission system to create a streamlined electronic data capture platform for the ADRC Program.
Accessible Data Quality Checks
NACC launched a streamlined UDSv4 data quality check process with published rules on the EDC Documentation site and a Form Validator library on GitHub. ADRCs can use these tools to run local checks before uploads, improving automation, transparency, and efficiency.
Cloud-based Multimodal Data Platform
In 2025, NACC launched a modern cloud-based platform that supports UDSv4 and scales to integrate new data streams for long-term research use. All ADRC data will link to NACCIDs and be searchable through the Data Platform.
Collaborations
Creating the New UDS with the Clinical Task Force (CTF)
UDS updates are critical for advancing the field, and the UDSv4 update was made possible through a close collaboration with the CTF under the leadership of Dr. Allan Levey. NACC works with the CTF to create meeting agendas, set strategic goals, and track deliverables. The CTF also includes a series of workgroups focused on specialties.
Clinical Task Force Members
Allan Levey, MD, PhD
Emory ADRC
Rhoda Au, PhD
Boston U ADRC
Lisa Barnes, PhD
Rush U ADRC
Brad Boeve, MD
Mayo Clinic ADRC
Jeffrey Burns, MD, MS
U of Kansas ADRC
Suzanne Schindler, MD, PhD
WashU Knight ADRC
Cindy Carlsson, MD, MS
UW Madison ADRC
Greg Jicha, MD, PhD
U of Kentucky ADRC
Andy Saykin, PsyD
Indiana U ADRC
Mary Sano, PhD
Mount Sinai ADRC
Sandra Weintraub, PhD
Northwestern ADRC
Suzanne Craft, PhD
Wake Forest ADRC
Megan Zuelsdorff, PhD
UW Madison ADRC
Howie Rosen, MD
UCSF ADRC
Kostas Lyketsos, MD
John Hopkins ADRC
Aimee Pierce, MD
OHSU ADRC
Liana Apostolova, MD, MS
Indiana ADRC