Key Dates

Related Announcements

NOT-OD-21-013 - Final NIH Policy for Data Management and Sharing

NOT-OD-14-124 - NIH Genomic Data Sharing Policy

Issued by

National Human Genome Research Institute (NHGRI)

Purpose

The National Human Genome Research Institute (NHGRI) is committed to improving the quality and utility of genomic and health-related data generated by federally funded genomics research. Ensuring that genomic and other -omic datasets are accompanied with high-quality metadata and phenotypic data will facilitate broader and more effective secondary data use, thus accelerating biomedical research advances. Metadata and the use of data standards also increase FAIRness (FAIR means Findable, Accessible, Interoperable, and Reusable) of the data, which is a central tenet of the NIH Strategic Plan for Data Science. The most recent NHGRI Strategic Vision affirms the importance and prioritization of improved data sharing.

The purpose of this Notice is to announce an effort at NHGRI to improve the availability and quality of ‘relevant associated data,’ as it is referred to in the NIH Genomic Data Sharing (GDS) Policy (e.g., metadata and phenotypic data). This Notice applies to projects subject to NHGRI implementation of the NIH Data Sharing Policies, including the NIH Genomic Data Sharing Policy and the NIH Data Management and Sharing Policy. NHGRI-funded and supported researchers are expected to:

1. share the metadata and phenotypic data associated with the study.
2. use standardized data collection protocols and survey instruments for capturing data, as appropriate.
3. use standardized notation for metadata (e.g., controlled vocabularies or ontologies) to enable the harmonization of datasets for secondary research analyses.

When writing grant proposals for NHGRI funds, applicants should include in their budget the cost of activities that are necessary to support data sharing, including the sharing of comprehensive and standardized metadata and phenotypic data. Metadata and phenotypic data are to be shared on the same timeline as genomic data (see NHGRI Data Standards page for data submission and release guidance).

Resources for common data collection forms, common data elements, and ontologies:

NHGRI strongly encourages the use of existing data standards and ontologies that are generally endorsed by the community of your research area, although it does not require the use of any particular one. Investigators should use data standard(s) and ontologies that facilitate comparison across similar studies within their research community.

NIH has established a Common Data Element (CDE) Resource Portal to assist investigators with identifying NIH-supported CDEs when developing protocols, case report forms, and other instruments for data collection. The Portal provides guidance about and access to NIH-supported CDE initiatives and other tools and resources in NIH-funded research. In addition, the PhenX Toolkit, funded by the NHGRI and other NIH Institutes and Centers, has a large collection of well-established and vetted phenotypic measurement protocols. When searching for appropriate data ontologies, investigators are encouraged to consider the ontologies registered in BioPortal.

For more information about this Notice, see NHGRI’s Metadata and Phenotypic Data Sharing Expectations FAQs.

Effective Date:

June 5, 2021

Inquiries

Please direct all inquiries to:

NHGRI Genomic Data Sharing (GDS) Contacts
National Human Genome Research Institute
Telephone: 301-402-0911
Email: [email protected]