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Provide resources to make datasets from high value, publicly funded clinical research/cohort studies widely accessible, (re)usable and interoperable. Ensure that studies generating rich molecular and digital datasets on well-phenotyped cohorts make all traditional, derived, and raw data and all data-coding files associated with any published studies available for secondary use in discovery and replication research.
2030 RFA-AG-15-011: Biomarkers of Alzheimer’s Disease in Down Syndrome (R01) RFA-AG-17-005: Alzheimer's Clinical Trials Consortium (ACTC) (U24) RFA-AG-18-014: Limited Competition: Data Coordinating Center for the Accelerating Medicines Partnership Target Discovery and Preclinical Validation Consortium AMP AD (U24) PAR-19-288 (reissuance of RFA-16-001): Limited Competition: NIA Genome Center for Alzheimer's Disease (GCAD) (U54 Clinical Trial Not Allowed) [Applications received starting April 25, 2020] PAR-20-110: National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (U24 Clinical Trial Not Allowed) RFA-AG-20-002: Centers on the Demography and Economics of Alzheimer's Disease and Alzheimer's Related Dementias (P30 Clinical Trial Optional) PAR-20-099: Harmonization of Alzheimer’s Disease and Related Dementias (AD/ADRD) Genetic, Epidemiologic, and Clinical Data to Enhance Therapeutic Target Discovery (U24 Clinical Trial Not Allowed) Advance Aging Research through CMS Data Linkage 3.A In Progress Provide resources to make datasets from existing and legacy clinical research studies on AD and related dementias widely accessible… DN 2015 AD Summit: 3A 2018 AD Summit: 6H, 6I News: New NIH consortium award to enhance clinical trials for Alzheimer’s disease, related dementias Blog: Increasing the usability of big data for Alzheimer’s research Blog: Open the portal door to Alzheimer’s Big Data Blog: NIAGADS! We have data! Blog: A new era of clinical trials in Alzheimer’s disease and related dementias News: NIH Supports new studies to find Alzheimer’s biomarkers in Down Syndrome Blog: The Healthy Cognitive Aging Project: A major data resource for cognitive epidemiology Blog: Open science delivers a wealth of AD/ADRD research data to a portal near you Blog: Raising the bar on data and biosample sharing from AD/ADRD clinical trials Blog: Data management and sharing requirements: Tips and tricks to plan ahead Blog: Working from home? Check out new genetics data for Alzheimer’s disease research! Workshop: Alzheimer’s Disease Genetics Global Symposium Workshop: Alzheimer’s Disease Genetics Global Symposium: Agenda Workshop: Breaking Data Barriers and Scaling Behavior Change Interventions to Benefit Older Adult Health through Public-Private Partnerships Workshop: NIH AD/ADRD Platforms Workshop: FAIRness Within and Across Data Infrastructures Workshop: Future Directions in Data Sharing and Archiving Workshop: 4th Workshop on Research Definitions for Reserve and Resilience in Cognitive Aging & Dementia Blog: Understanding the value of secondary research data Blog: NIA’s Alzheimer’s Disease Research Centers: Tap into four decades of resources Data Sharing and Reproducibility AD Knowledge Portal NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) NACC: Additional Resources Available Rush Alzheimer’s Disease Center (RADC) Research Resource Sharing Hub Gateway to Global Aging Data Data archiving for National Social Life, Health and Aging Project (NSHAP) and the National Health and Aging Trends Study (NHATS) AMP AD Biomarkers in Clinical Trials Project Alzheimer’s Biomarkers Consortium – Down Syndrome (ABC-DS) Alzheimer’s Disease Neuroimaging Initiative (ADNI) Alzheimer’s Clinical Trials Consortium (ACTC) National Alzheimer’s Coordinating Center (NACC): Forms and Documentation Research Network for the Harmonized Cognitive Assessment Protocol US Health and Retirement Study (HRS) HCAP data Mexican Health and Aging Study (MHAS) HCAP data English Longitudinal Study of Ageing (ELSA) HCAP data NIA IMPACT Collaboratory How Researchers Can Tap Into Data and Samples From Alzheimer’s Disease Research Centers Alzheimer's Disease Sequencing Project Phenotype Harmonization Consortium AllFTD Dataset ADRC Standardized Centralized ADRD Neuroimaging (SCAN) PET and MRI data are now available to the scientific community 2016
- Provide funding to make datasets from high value, publicly funded clinical research/cohort studies, annotated, curated and made widely available via web-based resources.
- Provide support to modernize the data management/data governance and data infrastructure of high value existing and legacy cohorts to maximize data accessibility, usability and interoperability.
- Ensure adequate support for storage, curation and annotation of data from clinical research/cohort studies and make rapid and broad sharing of data a condition for new and continued funding across federal and non-federal/philanthropic funding organizations.
Summary of Key Accomplishments
On January 25, 2023, the Final NIH Policy for Data Management and Sharing took effect. The policy requires NIH-funded researchers to submit a plan prior to award that outlines how scientific data from their research will be managed and shared.
Additionally, NIA funds or co-funds multiple ongoing data infrastructure projects that routinely produce publicly available data on accessible platforms from longitudinal cohort studies to enable various types of research. As one example, the NIA-funded Gateway to Global Aging Data offers a digital library of survey questions across multiple NIA-funded studies, a search engine for finding comparable questions across surveys, and identically defined variables for cross-country analysis. Likewise, the NIA-funded National Archive of Computerized Data on Aging offers access to a broad range of datasets relevant to aging research, including on AD/ADRD.
The NIA-funded Standardized Centralized Alzheimer's and Related Dementias Neuroimaging (SCAN) Initiative now provides positron emission tomography (PET) and magnetic resonance imaging (MRI) data from the Alzheimer's Disease Research Centers to the scientific community. Facilitated by the National Alzheimer's Coordinating Center, scientists can now access standardized brain images, specifically amyloid PET scans, tau PET scans, and MRI scans data linked to comprehensive clinical and cognitive data to advance their AD/ADRD-related research.
NIA also funds efforts to modernize data management and the data infrastructure of important population studies. For example, NIA provided supplemental funding to the Framingham Heart Study – Brain Aging Project (FHS-BAP) to harmonize disparate data from medical and other records and link these harmonized data to other AD-related study data. This supplemental funding also supported development of a web-based interface that improves researchers’ ability to query the FHS-BAP dataset.
In March 2023, NIA hosted a workshop to explore challenges, opportunities and future directions in data management and sharing. Workshop participants discussed best practices for consenting participants and sharing data from vulnerable populations, including individuals living with AD/ADRD and their caregivers. Information from this workshop can help inform data sharing practices. This workshop has been supplemented by additional training workshops provided to NIA Program Officers, NIA Aging Centers, the 2024 Meetings of the Gerontological Society of America, and outreach to the broader research community.
The key accomplishments summary is current as of September 2025.