NACC updates on Uniform Data Set v4 | National Alzheimer's Coordinating Center

UDSv4 Updates

Contents:

About NACC's Uniform Data Set
NEW
Introducing Version 4 of the Uniform Data Set (UDSv4)!
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.

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 Program (ADRC) 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.

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. Additionally, NACC is collaborating with a recently formed Indigenous ADRD Advisory Group to support ADRCs in respectfully and successfully engaging indigenous populations in their region.

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.

Responses as of April 11, 2022

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:

EDC Workgroup

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)

One-Stop-Shop for ADRC Data

NACC is making progress on developing the Data Front Door, a one-stop-shop for all ADRC data for all audiences that access Alzheimer’s research datasets. This tool will be freely accessible to researchers around the world via the NACC Data Platform and will allow for data sharing via Quick Access Files, an innovative cohort selection tool and the SCAN Public Dashboard.

Progress and Goals

NACC has collaborated closely with NCRAD, NIAGADS, SCAN, ADRCs, and ADRD researchers to begin to define requirements for the Data Front Door cohort selection tool and is planning to hold focus groups and conduct prototype testing to gather additional input from stakeholders and iteratively improve design features. This too will eventually provide advanced cohort data discovery, analytics, and even machine learning capabilities to data.

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

May 4, 2024 UDSv4 Virtual Clinical Training Workshop

Join NACC and the Clinical Task Force for this deep dive into UDSv4 Forms Training! Speakers will address form changes, instructions for conducting the form during a participant visit, changes in modes of data collection, where uniformity of responses are critical and allow ample time for audience Q&A.

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

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. Background to the concept of MBI and its importance as an early symptom of dementia is also shared. Watch here

Fall 2023 ADRC Meeting NACC Session

A comprehensive overview of the UDSv4 Transition was presented during the NACC Session at the Fall 2023 ADRC Meeting. Slides and videos from that sessions can be viewed here

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. Watch here

ADRC 2022 Spring Meeting - NACC Director's Session Presentation

View Slides

Email Updates

UDSv4 Development Timeline

The Alzheimer’s Disease and Research Centers (ADRCs) will have opportunities to review and provide feedback throughout the UDSv4 roll out. The current anticipated UDSv4 timeline is below. You can provide feedback here.

Preview UDSv4 Forms

Form	Form Name	CTF Status	PDF
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-Feb2024.pdf
C2	Neuropsychological Battery Test Scores	Approved	FormC2-Preview-Nov2023.pdf
C2T	Neuropsychological Battery Test Scores	Approved	FormC2T-Preview-Feb2024.pdf
D1a	Clinical Diagnosis	Approved	FormD1a-Preview-Feb2024.pdf
D1b	Biomarker and Etiological Diagnosis	Approved	FormD1b-Preview-Dec2023.pdf
Z1X	Checklist	Pending Content