NACC's Data Platform accelerates AD/ADRD discovery and translation
NACC is at the forefront of innovation in multimodal data collection, integration, interoperability, and sharing, driving advances in AD/ADRD discovery and translation. NACC is developing and transitioning to the new NACC Data Platform, a modern and secure platform for multimodal data integration, harmonization, and sharing. The new NACC Data Platform ingests and integrates existing (UDS, Neuropathology, mixed protocol MRI/PET) and new data streams (Digital Biomarker, Digital Neuropathology, EHR/Claims), as well as expanded partner metadata, such as standard MRI/PET computed data from SCAN, biospecimen sample assay data (e.g., blood-based biomarker data) from NCRAD, and genetic/genomic data from NIAGADS. The use of NACCID supports integration of all ADRC data streams, enabling researchers to quickly search and build cohorts and access all data modalities via the Data Front Door, making it a one-stop shop for ADRC participant data.
NACC's Data Platform is designed to make all data modalities
FAIR: findable, accessible, interoperable and reusable
NACC's Data Platform is designed to make NACC’s existing and new ADRC data modalities findable, accessible, interoperable and reusable (FAIR), with features that allow the platform to adapt to rapid changes in biomedical research and information technology moving forward. It is scalable to new data streams, interoperable with other data repositories, and provides secure sandbox options for collaborative data analysis to support AI-driven discovery. Together, this modernization will position NACC and the ADRCs at the leading edge of NIA’s new Data Management and Sharing Policy, enabling them to amplify their impact and better keep pace with rapid changes in biomedical research and information technology.
Modern Electronic Data Capture and Submission System
NACC’s modern electronic data capture system will enable electronic data capture and submission via a NACC-hosted REDCap project. Additionally, NACC will continue to host regular batch CSV submissions for the sites for UDSv4. NACC is also providing a third option for data submission via an Application Programming Interface (API), which will provide a method for ADRC systems to automatically connect to and transmit data to NACC.
NACC continues to collaborate with the ADRC Electronic Data Capture (EDC) Workgroup to build and refine the modern and scalable EDCS System for the ADRC Program. As of May 2024, the EDC Workgroup is comprised of 97 members from 33 ADRCs who are working together to define requirements, develop REDCap forms, and to provide effective documentation and training materials to the ADRC Program.
Learn more about the EDC workgroup and their impact
