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Data Sharing: Data accessibility (Milestone 3.A)

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.

Success Criteria

  • 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. 

Research Implementation Area
Data Sharing and Reproducibility
In Progress

Accomplishments/Implementation Activities

Funding Initiatives

Research Programs and Resources

Research Highlights

Relevant Recommendations

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