Data Sharing: Data accessibility (Milestone 3.A)
Timeline Start - End2016 - 2024
Research Implementation AreaData Sharing and Reproducibility
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.
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
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.
- 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