Data Sharing Policies
Rapid data sharing is essential for advancing research on human health and infectious and immune-mediated diseases. NIAID complies with all NIH data sharing policies, including the Genomic Data Sharing Policy (GDS) and, as of January 25, 2023, the NIH Data Management and Sharing (DMS) Policy. NIAID supports broad sharing of research data while protecting the privacy of human research participants. Details on NIH data sharing policies are available on the NIH Scientific Data Sharing website.
Which Policies Apply to My Research?
NIH offers a tool to assist researchers in determining which NIH data sharing policy applies to their research and details on NIH data sharing policies beyond the DMS and GDS policies.
NIAID-specific Data Management and Sharing Policy Guidance
Scientific data from NIAID funded and conducted research should be shared according to the NIH Data Management and Sharing (DMS) Policy. Below are additional guidance and clarifications.
What data types should be shared?
NIAID expects sharing of data and metadata associated with funded research using common data standards, if possible. Any ethical, legal, and/or technical factors that may affect sharing can be detailed in the Data Management and Sharing Plan. Data types may include, but are not limited to, genomic, transcriptomic, imaging, proteomics, metabolomics, immunological, flow cytometry, protein structures, and clinical data from human research participants generated during research projects and/or clinical trials.
The DMS Policy requires sharing of all scientific data, defined as all data necessary to replicate research findings regardless of whether the data are used to support scientific papers. For example, for clinical trials, this includes data for primary, secondary, and additional endpoints. However, not all data must be shared, including data resulting from calibration or preliminary analyses. See NIH guidance for additional details.
NIAID expects that researchers share de-identified human research participant-level data from NIAID funded or conducted clinical trials through controlled access platforms, such as AccessClinicalData@NIAID, dbGaP, Vivli, etc. Registration of studies on ClinicalTrials.gov will not be sufficient to meet data sharing requirements. Guidance is available on Protecting Participant Privacy When Sharing Scientific Data.
Where do I share data from NIAID funded or conducted research?
NIAID encourages the use of established domain-specific repositories for data sharing to support effective data discovery, access, and reuse. To select a repository for sharing data, review the list of NIH-Supported Data Sharing Resources, including NIAID-preferred repositories. When domain-specific repositories are not available, NIAID encourages researchers to share data via widely used generalist repositories.
It is common practice for researchers to share data as supplementary material to journal articles. Making data available solely through publications, supplemental material, etc. is not compliant with the NIH DMS Policy.
When do I share data from NIAID funded or conducted research?
The NIH DMS Policy requires data sharing at the time of publication or at the end of the performance period, whichever comes first. NIAID strongly encourages scientific data to be shared as rapidly as possible. All scientific data generated by a study, including data beyond that used to support a publication, should be shared before the end of the performance period.
Human and non-human genomic data subject to the Genomic Data Sharing (GDS) Policy must still comply with the GDS Policy timeline expectations for data submission and sharing. See NIH guidance for details on data submission and sharing timelines. In some instances, data sharing before publication or the end of the performance period may be warranted, such as during public health emergencies.
Genomic Program Administrators (GPAs)
The NIAID Genomic Program Administrators (GPAs) assist investigators with study registration and data submission to controlled-access repositories, such as dbGaP, and serve as experts on the Genomic Data Sharing (GDS) Policy for NIAID. Divisional GPAs provide support to investigators funded by or within the NIAID divisions, with assistance from the overall NIAID GPA in the Office of Data Science and Emerging Technologies.
Principle Investigators should direct questions related to data management, sharing, and policies to their Program Officers (POs). Questions from POs on these topics should be directed to their divisional GPA or the overall NIAID GPA (email@example.com).
Data Access Committee (DAC)
The NIAID Data Access Committee (DAC) provides guidance and oversight of controlled-access data housed within NIH designated repositories, including dbGaP and AccessClinicalData@NIAID. We encourage controlled access data repositories that host NIAID data to use the NIAID DAC for review of their Data Access Requests.
Tools and Resources for Data Sharing
Find useful tools and resources below. Not all of these are reviewed or endorsed by NIAID but may be of use to the community.
- Data Management and Sharing for Grants SOP
- NIH Scientific Data Sharing Website
- NIH Institute and Center Data Sharing Policies—list of specific data sharing policies instituted by institutes, centers, and research programs in addition to trans-NIH policies.
- NIH-Supported Data Sharing Resources—list of NIH-affiliated domain-specific and generalist repositories and guidance on Selecting a Data Repository
- Generalist Repository Comparison Chart—from the NIH Workshop on the Role of Generalist Repositories to Enhance Data Discoverability and Reuse
- NIAID Funding News articles on data management and sharing
- NIAID Data Ecosystem Portal—find infectious and immune-mediated disease data across many repositories
- DMPTool—helps researchers create data management plans (DMPs), including NIH-GEN DMSP
Webinars and Training Materials for Data Sharing
Find webinar and training materials for data sharing below. Not all of these are reviewed or endorsed by NIAID but may be of use to the community.