Office of Data Science and Sharing (ODSS)

Illustration of two people at a desk pointing at information on a computer screen.ODSS was established in 2021 to lead and coordinate NICHD’s activities within data science, bioinformatics, data sharing policy and compliance, and emerging technologies.

ODSS's vision is to enable a culture of responsible and innovative use of data and biospecimens that accelerates research and improves health for NICHD populations. The office's mission is to:

  • Develop a diverse, secure, and interoperable research data ecosystem
  • Advise on best practices and standards for data collection, management, sharing, and use across the research and funding lifecycles
  • Advance scientific discovery in support of NICHD's mission to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all

ODSS is a trusted informational resource for NICHD staff and researchers on all NIH data and specimen sharing policies.

ODSS serves as NICHD's primary liaison with the NIH Office of the Director's Office of Data Science and Strategy, to ensure engagement in large NIH data-science and emerging technology programs and ensure alignment with NIH, HHS, and federal programs and policies.

Director Rebecca Rosen provided an overview of ODSS activities (PDF 2.2 MB) in her January 2023 Council presentation and an update on the NICHD Data Strategy (PDF 1.87 MB) in her June 2024 Council presentation.

ODSS is a trusted informational resource for NICHD staff and researchers on all NIH data sharing policies.

The new NIH DMS Policy applies to funding applications and proposals submitted to NIH on or after January 25, 2023. The following are helpful links about the new policy for the NICHD investigator community:

DASH is a centralized resource for researchers to store, share, and access de-identified data from studies funded or conducted by NICHD. It also serves as a portal for requesting biospecimens from selected studies within the hub.

E-updates from DASH, published quarterly, provide information on upcoming NICHD data-collection projects, studies available in DASH, including those with biospecimens, as well as other noteworthy data news.

DASH E-Updates

In collaboration with NICHD, NIH, and external stakeholders, ODSS is building a federated, secure research and specimen data ecosystem that will measurably and rapidly facilitate data and specimen sharing by NICHD-funded researchers and increase access to shared data and specimens for the entire research community.

The NICHD Data Ecosystem includes people, data, processes, and technologies that align with the NICHD Strategic Plan and that support NICHD communities’ data science and sharing needs. In addition, ODSS is collecting “user stories” to describe these needs, within the following contexts:

  • NICHD investigators share their data and biospecimens to encourage reproducibility and broad reuse.
  • The researcher community:
    • Finds and uses NICHD data and specimens to enable new and innovative research
    • Securely analyzes NICHD and other data using new tools, training resources, and powerful computing resources
  • Participant communities visualize outcomes of taking part in NICHD research and benefit faster from new discoveries.
  • NICHD:
    • Tracks researcher compliance with NIH policies and good stewardship of government funds
    • Assesses and visualizes the scientific return on investment in data and biospecimen sharing
    • Promotes successful sharing strategies, policies, and tools to encourage broader use and reuse

The NICHD Ecosystem Use Case Library external link on GitHub tracks user stories, use cases, efforts, and associated documentation to improve capabilities across the ecosystem.

ODSS is currently assessing all data repositories that NICHD researchers use to share data or access shared data for secondary use. This assessment and the communities’ user stories will inform NICHD’s approach to improving sustainability and interoperability across the ecosystem to best support the institute’s needs. The office will also use information from the assessment to update the NICHD Data Repository Finder external link.

This illustration demonstrates the different levels of NICHD's data ecosystem. Data collected through NICHD research is de-identified, submitted to our Data and Specimen Hub (DASH), and stored on cloud servers that utilize top-level data encryption and security software. To make the data accessible in DASH and beyond, we support websites and applications that provide easy-to-navigate interfaces and search options for online visitors. These visitors can include members of the public, the scientific community, educators, and other researchers seeking information.

ODSS leads and collaborates on a variety of projects to maximize the responsible and innovative use of data across the NICHD Data Ecosystem. Reports and materials based on these projects will be posted in this section as they become available.

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