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.
- Research Implementation Area
- Data Sharing and Reproducibility
- In Progress
- 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)
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