UDSv4 Updates
One of the largest and most comprehensive longitudinal, standardized, clinical and neuropathological datasets in the world!
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 (ADRC) Program currently comprised of 35 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 (AD/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 introduces 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.
UDSv4 Tools & Resources for ADRCs
Supporting ADRCs Through the Transition to UDSv4
Use the following resources and tools to aid with the transition to UDSv4 and the new data submission options:
General
UDSv4 Onboarding Checklist - Preliminary step-by-step instructions with links to every resource ADRCs need to get started.
Moderated ADRC Program Community Forum (powered by Discourse) - A private, invitation-only moderated forum for ADRC members to view FAQs, ask questions, get answers, and collaborate with ADRC, NIA, CTF, EDC Workgroup, and NACC colleagues across the ADRC Program. A one-stop shop for self-serve, asynchronous support and collaboration that is accessible 24/7.
Office Hours (coming soon) - Unstructured Zoom meeting times where ADRC members can join and ask questions of NACC's Technology, REDCap, and Research Teams
UDSv4 FAQ – A continuously updated list of the most common questions and answers will be available on Discourse and through a link on the NACC Website
Tracking ADRC Progress – NACC will soon be launching a public leaderboard to track the ADRC Program’s transition to UDSv4. The leaderboard will show the number of UDSv4 and UDSv3 submissions, the percentage finalized, and the number of UDS participants at each ADRC.
Clinical
Review UDSv4 Forms and Coding Guidebook - Access PDF and REDCap versions of our UDSv4 forms and guidance on how to administer them.
- Live Trainings / Webinars NACC, in collaboration with the CTF, has and will continue to offer both live and recorded clinical training webinars
December 2024 Tackling DSM-5-TR in UDSv4: Pointers and Cases
This webinar addresses the use of DSM-5-TR criteria as part of UDSv4. Specifically, speakers discuss the context of using the criteria, how to access them via Psychiatry Online, how to apply them to individual cases, and how to complete the relevant UDSv4 forms (A5/D2 and D1a).
November 2024 Form B8 Neurological Examination Findings training video
This training video created by the University of Kentucky Sanders-Brown Center on Aging covers the full neurological examination.
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.
Operationalizing “Impaired, not MCI” in UDSv4
This webinar addresses operationalizing “Impaired, not MCI” vs MCI in the UDSv4 including an overview of the item on UDSv4 Form D1a.
- UDSv4 Virtual Clinical Training Workshop
Our experts present an overview of the new modules, features, forms, and changes in the UDSv4. For more info, view our Q&A for answers regarding the UDSv4 forms and data collection.
- UDSv4 Virtual Clinical Training Workshop
Technical
General Technical Resources
Moderated ADRC Program Community Forum (powered by Discourse) Find technical assistance, interact with experts, and collaborate with others across the ADRC program.
Technical Documentation & REDCap SOPs - Instructions and best practices, including: calculated fields, custom reporting, data access groups, REDCap data quality rules, data dictionaries, customization of user roles, how to use Crosswalks, JSON files, XML, and more.
File Downloads - Download UDSv4 files including REDCap Project XML, REDCap Data Dictionary, Coding Guidebook, and individual form resources including REDCap Instrument Zip files, PDFs, Crosswalks, and JSON versions of the crosswalks.
NACC GitHub Library Access and download software, code for error checks, and other technical resources.
Error Checking Process Review the process for running error checks and receiving an error report after submission. Sites can implement the error checks locally to check their data before submitting using the NACC Form Validator library. Instructions on using the validator library can be found here.
UDSv3 to UDSv4 Crosswalks - Data harmonization instructions between UDSv3 and UDSv4 for each form.
NACC Data Platform Access - Center members gain access to the ADRC Portal on the NACC Data Platform via permissions that are set by center Administrators in their NACC Directory member profile. If you don’t currently have access, please contact your center Administrator and ask them to add you to the Directory (if it is not already in there) and mark your permissions. You will subsequently receive an email with instructions for setting up your account.
NACC Data Platform Sandbox (coming soon) – Practice environment for ADRCs to test data submissions and API submissions without impacting finalized or “real” data
UDSv4 Digital Voice Resources
UDSv4 Digital Voice Webpage - Provides a central hub for ADRCs interested in learning more about digital voice data collection as part of UDSv4. NACC and the CTF Technology WG have collaborated on several resources hosted on this webpage to aid ADRCs in collecting digital voice data. At this time, digital voice capture is encouraged but not required. Resources available on the UDSv4 Digital Voice webpage include:
Digital Voice Start-up Checklist - A guide for ADRC's and other interested groups in getting started to collect digital voice audio recordings as part of the UDSv4 cognitive exam for research analysis.
IRB Protocol and Informed Consent Language - Provides ADRC's with guidelines, example IRB protocol and informed consent language, and helpful suggestions to aid centers in obtaining regulatory compliance for the collection and storage of digital voice data as part of UDSv4.
Digital Voice Recording Manual - Provides in-depth instructions and best practices for collecting, storing, and processing digital voice data at your ADRC.
June 2024 Digital Voice Workshop video
This workshop provided guidance on the consent process, recording procedures, and data storage for digital voice data. Leaders in the digital voice field presented research findings emphasizing the scientific importance and potential of digital voice data.
UDSv4 Data Collection and Submission Options and Resources
UDSv4 Data Collection Options
ADRC Local REDCap  | Use NACC’s UDSv4 REDCap project XML file or Data Dictionary Use this XML file to instantly create a UDSv4 project on your local REDCap instance to collect UDSv4. Alternatively, you can use the Data Dictionary to import individual UDSv4 instruments into an existing project on your local REDCap instance. |
Alternative ADRC Local EDC System  | Collect data using your own local EDC ADRCs may use their own local EDC for data collection. NACC has published a REDCap Data Dictionary, Coding Guidebooks, Data Crosswalks and a Data Element Dictionary for building or modifying an EDC to collect UDSv4 data. |
PDF Forms  | Collect data using UDSv4 PDFs PDF forms will continue to be available for ADRCs to download and print for initial UDSv4 data collection. In addition to English, NACC will also be making UDSv4 forms available in Spanish, Mandarin, and Cantonese translations. |
Direct Entry into NACC REDCap  | Enter UDSv4 forms data directly into the NACC hosted REDCap instance Each ADRC will have access to a NACC-hosted UDSv4 REDCAP project available through their ADRC Portal. For further assistance, watch a demo video or read the instructions. |
UDSv4 Submission Options via the NACC ADRC Portal
Details and SOPs for each option outlined here.
Upload with our API  | Programmatic Upload Using an API, upload to the NACC Data Platform using the Flywheel CLI tool or a Flywheel provided SDK. |
Batch CSV Upload  | CSV Batch file submission Submit a CSV containing batch UDSv4 form data to NACC through the ADRC portal. |
Automated Submission | Direct Entry Use NACC’s hosted REDCap instance to enter UDSv4 data directly into REDCap forms and submit to the NACC Data Platform. |
Additional UDSv4 Data Collection and Submission Training and Resources
| May 2024 Streamlining Data Collection with Skip Logic Branching logic, or skip logic, streamlines the data entry process by only displaying questions that are relevant. This improves data quality. | |
| April 2024 Submit UDSv4 Data via the ADRC Portal Demonstration video of the ADRC Portal data submission interface. | |
| June 2024 Data Submission Training Webinar that highlights some of the key features in the modernized UDSv4 data submission system. |
Review UDSv4 Forms
All UDSv4 Initial Visit Packet forms have been finalized! Visit the Electronic Data Capture Documentation page to download the PDF forms, Coding Guidebook, REDCap Instrument Zip files, Crosswalks, and JSON versions of the crosswalks.
Updates
Email Updates
UDSv4 Timeline
The current anticipated UDSv4 timeline is below.
Once NACC launches all finalized UDSv4 materials, the UDSv4 Start Window will begin. During this time, ADRCs will have access to UDSv4 training materials to help onboard their site. ADRCs can begin collecting and submitting UDSv4 data at any time during this window.
The UDSv4 Deadline is the date by which all ADRCs must switch over to UDSv4 collection. After this date, sites may not conduct any prospective UDSv3 visits; all collection must be done with UDSv4. NACC will track ADRC compliance to ensure all UDS visits are done with UDSv4 after this date! NACC will make an exception for UDS visits for Spanish and Chinese-speaking participants, as these translations will be available after the UDSv4 launch.
Collaborations
Co-Creating the New UDS: NACC Partners with the 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 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.
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 95 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.
Modernization
NACC Modernization in Support of UDSv4
- 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
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.
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