Non-NCI-Funded Investigators Submitting Genomic Data

If you are not funded by NCI, you may still be able to share your genomic and other -omics study data through an NIH repository. An NCI subcommittee will review each application on a case-by-case basis considering the scientific value of the data, its usage of NIH resources, and the data use limitations (DULs). NCI will only accept data that complies with NIH’s Genomic Data Sharing (GDS) Policy. Though this process will register your study through the database of Genotypes and Phenotypes (dbGaP), NCI may deposit your data into any NIH repository.

To apply to share your data set through NCI, follow the steps below: 

Step 1: Complete Documentation

You must complete both the Institutional Certification (IC) form and the Online Non-NCI-Funded Study Information forms.

Tips for Completing the IC Form

We’ve outlined a few points to clarify common questions from previous data submitters requesting to upload data to an NCI repository.

Page 1: Study Information

  • List NCI’s Office of Data Sharing (ODS) as the name of the program administrator.

Page 2: Assurance

  • Consult with your Institutional Review Board (IRB) or equivalent privacy board to assure NIH that the study being submitted is consistent with NIH’s GDS policy. You should send the IC along with the participant consent forms and any other pertinent information to the board to help complete this section.
  • Select the radio button to indicate whether data is made available through controlled or unrestricted access.
  • Leave the checkbox under the “Genomics Summary Results” unchecked unless your IRB determines the study’s designation is sensitive and access to the primary analyses of genomic research must be restricted.

Page 3: Data Use Limitations

  • Select appropriate DULS and/or DUL modifiers based on the language of participant’s consent form and your IRB’s advisement. You can learn more about what is imposed by these restrictions by reading the Standard Data Use Limitations table created by NIH’s Office of Science Policy.

Page 4: Signatures

  • Ask your institutes signing official to sign.
  • Don’t forget to sign the document yourself.

Step 2: Email IC Form to NCI Office of Data Sharing 

Email the completed IC form to the non-NCI-funded data submission box. NCI’s ODS staff will review documents for completeness. Staff may contact you if additional information or clarification is needed. 

Step 3: Await NCI Review Subcommittee Decision

After the initial review, ODS will send these documents to an internal review subcommittee. That committee will determine whether NCI will accept the study and store the data within one of its repositories. The process may take up to two weeks to obtain a decision. ODS will inform you of the committee’s decision. 

Step 4: Upload Metadata and Data

NCI ODS will register the study in dbGaP. This study registration will kick off time-sensitive processes you should be ready to respond to:

  • Accept the invitation to join the dbGaP submission portal within 72 hours.
  • Complete the Study Data Outline. This is available via the portal and is used to provide more information about the study to be registered in dbGaP. After you complete this page, you will receive your dbGaP study accession (phs number) and be redirected to the next page in the process.
  • Upload phenotype metadata files. This must be done within two weeks of receiving the submission portal invitation email. For more information about how to format the metadata files, you can review the dbGaP Submission Guide and templates. At this point in the process, you may also upload any molecular data (not raw sequencing files) to the portal.
  • Await instructions to upload raw data. dbGaP Data Curators will perform quality assurance/quality control checks on the metadata (study configuration file, subject sample mapping files, etc.) files. After the subject, sample, and consent data have been loaded, an NCI repository or dbGaP will email you instructions for how to upload your data.

As a short checklist summarizing the above steps, refer to the following infographic.

1. Complete documentation: Complete and submit the online non-NCI-Funded study information form, Fill in Institutional Certification (IC) form, Share IC with institutional review board for consultation, ask your institutional signing official to sign IC form, sign the IC form. 2. Email IC Form to NCI ODS mailbox. 3. Awarid Decision: Respond to any question from ODS and await decision (~2 weeks) 4. Submit Metadata and upload data: accept dbGaP inviitation to upoad metadata within 72 hours. Upload metadata within 2 weeks. Work with NCI repository to upload data within 6 weeks.

NIH Repositories Data Set Release Expectations

After the data is uploaded, dbGaP/NCI-approved repositories will release the data for authorized access as quickly as possible, but dbGaP may need up to six weeks to release the study. 
For additional questions about submitting data to NCI and NIH repositories, please email NCI's ODS.

NIH Data Repositories Help Resources

If you encounter difficulties submitting data to dbGaP, please contact their help resources directly.

Database of Genotypes and Phenotypes (dbGaP) dbGaP Contact Form
Sequence Read Archive (SRA)

SRA Help Desk

Other National Center for Biotechnology Information (NCBI) Data Repositories National Library of Medicine Help Desk

For additional questions about data sharing, please contact NCI's ODS.


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