NHGRI Data Repository Requirements

Primary Repository: The Analysis, Visualization, and Informatics Lab-space (AnVIL) serves as the primary repository for NHGRI-funded data, metadata, and associated documentation. AnVIL meets the security and operational standards necessary to be considered an NIH Controlled-Access Data Repository (CADR) and NIH-Designated Genomic Data Repository (NOT-OD-25-159). As such, AnVIL accepts a variety of data types, including genomic and other omics data, and phenotypic data derived from human research participants, and supports both controlled-access and unrestricted data (NOT-HG-24-020). Through NHGRI’s support for AnVIL, data storage costs are covered for NHGRI-funded investigators when data are released on AnVIL. AnVIL data submitters are expected to adhere to AnVIL's data, metadata, and schema requirements to ensure maximal reuse by secondary researchers; submission guidance is available on AnVIL’s page about submitting data. Investigators seeking to submit non-NIH funded data to AnVIL should follow the instructions on the AnVIL data approval page for how to submit a request.

Applicants may propose an alternative repository in their Data Management and Sharing (DMS) Plan, which NHGRI will evaluate prior to funding. When submitting to multiple repositories, study data, associated documentation, and metadata should be consolidated in a single location whenever possible. 

Metadata and Phenotypic Data: Recipients must share metadata and phenotypic data associated with their study; use standardized data collection protocols and survey instruments for capturing data, where appropriate; and use standardized notation for metadata (e.g., controlled vocabularies or ontologies) to support dataset harmonization for secondary analyses (NOT-HG-21-022). 

Controlled-Access Study Registration: dbGaP registration is required for all human genomic studies covered by the GDS Policy and all studies sharing human data through an NIH Controlled-Access Data Repository. This includes studies sharing controlled-access data via AnVIL, studies sharing human genomic data via a non-NIH repository, and those unable to share human genomic data due to justifiable limitations. For questions about the registration process, contact the NHGRI Genomic Program Administrator ([email protected]).