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Provide support to establish/improve the interoperability among relevant biomedical data repositories. Democratize the use of large scale molecular and clinical data by building computational infrastructure for sustainable data storage and processing that will be accessible to researchers world-wide.
2030 RFA-AG-18-014: Limited Competition: Data Coordinating Center for the Accelerating Medicines Partnership Target Discovery and Preclinical Validation Consortium AMP AD (U24) RFA-AG-20-043: SCAN: Standardized Centralized Alzheimer's and Related Dementias Neuroimaging (U24 Clinical Trials Not Allowed) PAR-20-110: National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (U24 Clinical Trial Not Allowed) RFA-AG-25-001: Deriving Common Data Elements from Real-World Data for Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (U24 Clinical Trial Not Allowed) 3.B In Progress Provide support to establish/improve the interoperability among relevant biomedical data repositories.… DN 2015 AD Summit: 4C 2018 AD Summit: 2Q, 6H 2021 AD Summit: 1.H and 2.E Blog: Symposium celebrates open science, launches new data platform Blog: NIAGADS! We have data! Blog: Open science delivers a wealth of AD/ADRD research data to a portal near you Workshop: The NIH Aging and AD/ADRD Omics Data Resources: A Path to Interoperability Data Sharing and Reproducibility NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) NIAGADS Genomics Database AD Knowledge Portal Agora Standardized Centralized Alzheimer's and Related Dementias Neuroimaging (SCAN) How Researchers Can Tap Into Data and Samples From Alzheimer’s Disease Research Centers Center for Alzheimer's and Related Dementias (CARD): Harmonized Data-Derived Resources for the Alzheimer's Disease and Related Dementias Community 2016
- Establish/improve the interoperability across disparate NIH-supported AD/ADRD data repositories by improving the data infrastructure and enabling data access through “passports” or similar authentication mechanisms.
- Expand existing and build new computational infrastructure for sustainable data storage, data curation and data management to enable rapid and broad, high-fidelity data sharing accessible to researchers world-wide.
- Democratize the use of large scale molecular and clinical data by supporting the development of:
- Web-based tools and interfaces to allow data mining and analyses of summary results by data scientists, biologists, clinicians and citizen scientists.
- Community-wide, open-source computational tools and pipelines for standardized data processing and analysis for diverse data types generated in AD/ADRD research, as well as their downstream integration into multi-scale models.
Summary of Key Accomplishments
The NIA-supported AD Knowledge Portal provides access to high quality multi-omic data from human and animal model biosamples. The Portal provides sustainable, cloud-based data storage and analytical workspace designed to make data discoverable, accessible, and usable by qualified researchers. These invaluable data resources are being used by researchers from more than 50 countries. A key component of the Portal data infrastructure is the web-based, open-source Agora platform, which provides an easy way for researchers without bioinformatics experience to mine the results from a variety of computational analyses. The Portal is interconnected with several NIA-supported data resources and repositories: Laboratory of Neuroimaging (LONI), the Rush AD Research Resource Sharing Hub, and AlzPED.
NIA published a funding opportunity, Deriving Common Data Elements from Real-World Data for Alzheimer’s Disease (AD) and Alzheimer’s Disease Related Dementias (ADRD) for a new infrastructure project that aims to develop common data elements (CDE) across NIA-funded studies on AD and ADRD to enhance data harmonization and interoperability among these studies. The initiative will use real-world data from electronic health records and claims data from the Centers for Medicare and Medicaid to facilitate timely availability and use of longitudinal data from NIA-funded studies.
NIA supports the NACDA Colectica Portal (R33AG078392) interoperability project as part of the National Archive of Computerized Data on Aging (NACDA) to develop harmonized variable searches cross series comparisons, which means data users can explore variables related to cognition, health, and other concepts/topics across different U.S. National research collections.
In July 2024, NIA led the convening of the NIH Aging and AD/ADRD Omics Data Resources: A Path to Interoperability workshop. With a focus on AD/ADRD omics data and related resources, the workshop examined opportunities and challenges in data interoperability, representation and usage, to inform the establishment of an equitable and effective omics data ecosystem for aging and AD/ADRD research.
The key accomplishments summary is current as of September 2025.