Advanced Multimodal Data Integration and Sharing
NACC is developing and transitioning to the new NACC Data Platfrom (NACC DP), a modern and secure multimodal data integration, harmonization, and sharing platform. The new NACC DP will ingest and integrate existing (UDS, Neuropathology, non-standard MRI/PET) and new data streams (Digitial Biomarker, Digital Neuropathology, EHR/Claims), and 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 standardized NACC identifiers supports integration of all ADRC data streams, enabling researchers to quickly search, build cohorts, and access all data modalities via the Data Front Door (DFD).
The NACC DP is designed to make ADRC data as findable, accessible, interoperable, and reusable (FAIR) as possible. 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. The DFD will enable researchers to tackle new questions in the field and will accelerate Alzheimer’s Disease and Related Dementia (AD/ADRD) discovery. Together, this modernization will also position NACC and the ADRCs at the leading edge of NIA’s new Data Management and Sharing Policy (released Oct 2020) enabling them to amplify their impact and better keep pace with rapid changes in biomedical research and information technology moving forward.
Progress and Goals
The NACC DP modernization is underway and is transforming how NACC:
- Collects data from ADRCs
- Integrates and harmonizes existing and new data streams
- Ensures data quality
- Makes all ADRC data searchable, accessible, and visualizable to ADRCs and AD/ADRD researchers around the world
NACC has already transferred the current ADRC data to the new NACC DP/secure AWS Cloud and will be launching the ADRC Portals, SCAN dashboard, and expanded Quick Access Files in the summer of 2023. NACC is also making steady progress toward launching a new electronic data capture system in collaboration with the ADRC Electronic Data Capture (EDC) Workgroup.