UDSv4 Updates
Contents:
- About NACC's Uniform Data Set
- Collaborating with the ADRC Program to Expand UDS Participant Diversity
- Updating the UDS Data Content - A Collaboration with the Clinical Task Force
- NACC Modernization in Support of UDSv4
- Building an Integrated Pipeline and Repository for a Growing Set of Data Streams
- Expanded Data Search, Visualization, and Access: The Data Front Door (DFD)
- Keeping You in the Loop - UDSv4 Updates for the ADRC Community
- Preview UDSv4 Forms
About NACC's Uniform Data Set
Working in collaboration with the ADRCs, currently comprised of 37 centers across the United States, NACC has developed and maintained an extensive 46,000+ 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 cognitive assessment data that has been captured through annual visits by research experts across the ADRC Program.
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 likely have a substantial impact on recovery from Long Covid and 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.
Updating the UDS Data Content - A Collaboration with the Clinical Task Force
We are in the midst of a UDS content update. The last update happened in 2015 and a lot has changed since then. It is important that the UDS content be updated to reflect new research and technology developments in the field and our evolving understanding of the best clinical practices.
Collaboration with the Clinical Task Force
UDS updates are critical for advancing the field and we are honored to have the opportunity 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 Allan Levey. NACC collaborates with the CTF on meeting agendas, setting strategic goals, and tracking deliverables. The CTF also encompasses a series of workgroups that are focused on specific specialties.
Roadmap for updating UDS content
The CTF incorporates the latest scientific concepts and clinical concepts in ADRD into the new version of the UDS. The committee is comprised of ADRD experts and consults with content experts in SDOH and other fields to produce the latest version of the UDS represented by the Roadmap below.
NACC Modernization in Support of UDSv4
This time around, the UDS update is more than just a content update. It is going to be different because it will be accompanied by a lot of other big changes at NACC - all of which are aimed at modernizing our systems and better serving the ADRC community. NACC is developing a series of modern UDS related tools and resources in collaboration with the ADRC community.
These will include:
- A new electronic submission system
- A pipeline and repository to accommodate additional data integrations
- A new data search, visualization, and access interface for all ADRC data
Developing a Modern Data Submission System Powered by REDCap
NACC is actively updating its existing submission system, which is 20 years old, to create a streamlined electronic data capture platform for the ADRC Program. In addition to enabling electronic data capture, NACC will continue to host regular batch submissions for the sites for UDSv4.
Why REDCap?
REDCap was chosen because it is the canonical tool for forms data capture. As of our April 2022 survey, most (29) ADRCs are already using REDCap or intend to adopt it.
The Electronic Data Capture Workgroup - A Collaboration with the ADRC Program
NACC is currently collaborating with the ADRC Program to develop an electronic data capture systems for UDSv4 that will effectively serve the needs of the community. The Electronic Data Capture (EDC) Workgroup was launched by NACC in collaboration with the Data Core Steering Committee in January 2022. The EDC Workgroup is currently comprised of approximately 75 members from across approximately 28 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:
Building an Integrated Pipeline and Repository for a Growing Set of Data Streams
NACC is actively working to build a new pipeline and repository that will not only accommodate UDSv4 forms but also effectively scale to collect and integrate new data streams over the course of our current award cycle and provide a robust long-term resource for the community. All data streams will be connected to NACC IDs and searchable through the Data Front Door.
New and Expanded Data Streams
NACC is expanding its repository to integrate electronic health records, Medicare claims, digital biomarkers, and digital neuropathology data, as well as additional genetic/genomic (NIAGADS), biospecimen (NCRAD), and standard MRI and PET (SCAN) metadata. Furthermore, NACC is collaborating with its partners at NIAGADS and NCRAD to transform data-driven discovery in Alzheimer’s by making all integrated ADRC data streams searchable and accessible through a single innovative “Data Front Door” interface (See section below). This novel data search and visualization portal will make all these data streams readily searchable and accessible to the international research community. This work will open the door to new discoveries in Alzheimer’s, improve our understanding of the disease, and enable the development of earlier disease detection technologies and more impactful therapeutics.
Expanded Data Search, Visualization, and Access: The Data Front Door (DFD)
- Concept - improved data access and utilization: The DFD will serve as the one-stop-shop for all ADRC data with all data streams integrated and linked by NACC IDs. This will make ADRC data more interoperable, harmonized, and FAIR.
- Data search and access: The DFD will be hosted on the NACC website. Using web technologies and the Leaf software, we will facilitate integrated search across other related AD databases. This is in the planning stages but is setting a direction for a single access point for ADRD datasets.
- Data visualization and cohort discovery via Leaf (open source software): NACC is planning to leverage an updated version of Leaf as a data visualization and cohort discovery tool for the initial DFD protoype. We are currently piloting Leaf as a cohort selection tool for ADRC data with several partners.
Get involved with the Data Front Door
NACC, NCRAD, and NIAGADS are eager to partner with ADRD researchers and clinicians from across the Alzheimer’s Disease Research Centers (ADRC) Program and beyond to build the “Data Front Door” (DFD), a one-stop-shop for all ADRC data. Our goal is to have this platform integrate and connect all ADRC data streams to NACC IDs and serve as an effective search, visualization, and access interface for this data. NCRAD and NIAGADS data will continue to be housed within the NCRAD and NIAGADS databases but biomarker and genetic metadata for all ADRC participants will be searchable through the DFD. Our hope is that harmonizing these data streams and connecting them to NACC IDs will enable researchers to investigate and answer new questions in Alzheimer’s disease.
We welcome you to share your input in two ways:
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 regular UDSv4 email updates. We will also be collaborating with the CTF to provide webinars in UDSv4.
UDSv4 Webinars and Presentations
June 3, 2022 CTF/NACC UDSv4 Webinar
The June 3rd Webinar covered some of the new UDS content, provided an overview of the modern systems coming online at NACC, and how REDCap can facilitate capturing the UDS at ADRCs.
Agenda
| Overview of UDSv4 | Allan Levey, MD of Emory University, Goizueta ADRC |
|---|---|
| Neuropsychiatric Symptoms (NPS & MBI) | Kostas Lyketsos, MD of John's Hopkins ADRC |
| AD Specific Treatment Form | Suzanne Schindler, MD, PhD of Washington University, Knight ADRC |
| Subjective Cognitive Decline | Andrew Saykin, PhD of Indiana ADRC |
| Social Determinants of Health | Lisa Barnes, PhD of Rush ADRC and Megan Zuelsdorff, PhD of Wisconsin ADRC |
| COVID F2/F3 Forms | Carlos Cruchaga, PhD of Washington University, Knight ADRC |
| UDSv4 - Next Steps | Sarah Biber, PhD and Laura McLeod of NACC |
ADRC 2022 Spring Meeting - NACC Director's Session Presentation
Email Updates
Preview UDSv4 Forms
| Form | Form Name | CTF Status | |
|---|---|---|---|
| A1 | Participant Demographics | Approved | FormA1-Preview-May2023.pdf |
| A1a | Social Determinants of Health | Approved | FormA1a-Preview-May2023.pdf |
| A2 | Co-Participant Demographics | Approved | FormA2-Preview-May2023.pdf |
| A3 | Participant Family History | Approved | FormA3-Preview-May2023.pdf |
| A4 | Participant Medications | Approved | FormA4-Preview-May2023.pdf |
| A4a | AD-Specific Drug Treatment | Approved | FormA4a-Preview-May2023.pdf |
| A5/D2 | Participant Health History | Approved | FormA5D2-Preview-May2023.pdf |
| B1 | Evaluation Form: Physical | Approved | FormB1-Preview-May2023.pdf |
| B3 | UPDRS-Parkinson's | Approved | FormB3-Preview-May2023.pdf |
| B4 | Global Staging-CDR: Clinical Dementia Rating | Approved | FormB4-Preview-May2023.pdf |
| B5 | Behavioral Assessment: NPI-Q | Approved | FormB5-Preview-May2023.pdf |
| B6 | Behavioral Assessment: GDS | Approved | FormB6-Preview-May2023.pdf |
| B7 | Functional Assessment: FAS | Approved | FormB7-Preview-May2023.pdf |
| B8 | Evaluation Form: Neurological Examination Findings | Approved | FormB8-Preview-May2023.pdf |
| B9 | Clinical Judgement of Symptoms | Approved | FormB9-Preview-May2023.pdf |
| C2 | Neuropsychological Battery Test Scores | Pending Content | |
| C2T | Neuropsychological Battery Test Scores | Pending Content | |
| D1a | Clinical Diagnosis | Pending Content | |
| D1b | Biomarker and Etiological Diagnosis | Pending Content | |
| Z1X | Checklist | Pending Content |