Data Sharing: Data accessibility (Milestone 3.A)
In Progress
Timeline Start - End
2016 - 2024Research Implementation Area
Data Sharing and ReproducibilityProvide 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.
Success Criteria
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Provide funding to make datasets from high value, publicly funded clinical research/cohort studies, annotated, curated and made widely available via web-based resources.
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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.
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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
In 2020 NIH issued its Final NIH Policy for Data Management and Sharing, requiring researchers to submit a data sharing plan to the funding Institute. NIA funds or co-funds multiple ongoing data infrastructure projects that routinely produce publicly available data on accessible platforms from longitudinal cohort studies that enable various types of research.
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. The NIA-funded National Archive of Computerized Data on Aging (NACDA) offers access to a broad range of datasets relevant to aging research, including on AD/ADRD.
A 2021 NIA expert panel meeting identified opportunities to leverage big data to design and test AD/ADRD interventions and improve health care delivery for this vulnerable population.
The key accomplishments summary is current as of March 2022.
Accomplishments/Implementation Activities
Funding Initiatives
- 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)
Research Programs and Resources
- 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