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Data Sharing: Data accessibility (Milestone 3.A)

In Progress

Timeline Start - End

2016 - 2024

Research Implementation Area

Data 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.

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. 

Accomplishments/Implementation Activities

Funding Initiatives

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