Data Sharing and Public Access Policies

Cancer treatment options improve when investigators broadly share their data with the research community. Equitable data sharing balances data accessibility with the rights of the patients who allow their data to be used and reused to catalyze discovery.

To ensure broad and responsible data sharing for the researcher, patient, and advocate communities, NCI’s research and data adhere to all NCI and NIH data sharing policies including, but not limited to, the excerpt listed below. For additional policies on NIH data sharing, visit the NIH Grants and Funding page.

NIH Data Management and Sharing Policy

This policy exists to facilitate broad, accountable data sharing. For a time, the 2003 NIH Data Sharing Policy coexisted with the 2023 NIH Data Management and Sharing Policy. The latest policy went into effect in January 2023.

Read our blog for a quick start guide on the key distinctions between the 2003 and 2023 policies as well as to learn more about resources available for investigators.

Send questions via the comment section below or email NCI’s Office of Data Sharing. Grantees may also contact their program officers for additional information and guidance.

Resource Links

Following the policy expectations
Drafting data sharing plans
Choosing a repository
Practicing the fundamentals

NIH Genomic Data Sharing (GDS) Policy

The Genomic Data Sharing (GDS) Policy sets expectations for sharing NIH funded data broadly and equitably through a supported NIH repository. NCI’s data submission processes are consistent with the NIH GDS Policy guidelines and requirements.

The GDS Policy applies to research that:

  • is funded by any NIH funding mechanism (extramural competing grant applications, contract proposals, or intramural projects).
  • generates large-scale human and non-human genomic data. For examples of large-scale genomic data, view the “Expectations for Data Submissions and Release Based on Processing Level” table in the Supplemental Information for the NIH Genomic Data Sharing Policy.
  • generates small-scale genomic data that NCI determines should be shared because of the state of the science, programmatic priorities, utility, and/or value of the data for the research community. Examples of these data include, but are not limited to, mitochondrial DNA sequencing, projects focusing on under-studied populations, or projects examining rare cancers and their subtypes and outcomes.

Extramural research initiated prior to January 25, 2015, and intramural research prior to August 31, 2015, will continue to operate under the terms of the policies that were in effect when the research began. This includes:

Review the NIH GDS Policy for expectations and supplemental instructions.

Cancer Moonshot℠ Public Access and Data Sharing Policy

The primary goal of NCI’s Cancer Moonshot is to significantly accelerate cancer research discovery and meaningful implementation. The Cancer Moonshot Public Access and Data Sharing Policy addresses the recommendation of the Blue Ribbon Panel’s Enhanced Data Sharing working group to the National Cancer Advisory Board that researchers, clinicians, and patients should collaborate in sharing their collective data and knowledge about cancer to accelerate progress towards improving cancer outcomes.

Under this policy, applicants for Cancer Moonshot Research Projects are required to submit a “Public Access and Data Sharing Plan” that describes their proposed process for making, to the extent possible, resulting Publications and the Underlying Primary Data immediately and broadly available to the public. Investigators applying for Cancer Moonshot funds must provide a justification to NCI if such sharing is not possible.

The policy applies to:

  • competing grant and cooperative agreement applications in response to a Cancer Moonshot Research Project Funding Opportunity Announcement, submitted to NCI on or after October 1, 2017.
  • proposals for contracts related to Cancer Moonshot Research Projects submitted on or after October 1, 2017.
  • NCI intramural Cancer Moonshot Research Projects generating Publications and Underlying Primary Data, submitted on or after October 1, 2017.

Review the Cancer Moonshot Public Access and Data Sharing Policy to learn about the policy’s expectations.

Intramural Research Program (IRP) Human Data Sharing (HDS) Policy

To further advance and accelerate research to benefit the public health, data developed in the NIH Intramural Research Program (IRP) (NIH-owned or jointly owned) should be collected in a manner that permits and promotes the broadest sharing possible. NIH IRP investigators are expected to broadly share data for secondary research purposes consistent with applicable laws, regulations, and policies. Data sharing may be limited, in certain cases, by agreements with outside collaborators, e.g., Cooperative Research and Development Agreements (CRADAs), Clinical Trial Agreements, or other agreements.

The policy applies to all NIH IRP human data (including the NIH Clinical Center as well as NIH Institutes and Centers).

Review the IRP HDS Policy to learn what’s expected from investigators supported by the IRP program.

NCI Clinical Trial Access Policy

NCI believes that the full value of NCI-supported Interventional Clinical Trials can be realized only if the results of clinical trials are published as rapidly as possible. The Clinical Trial Access Policy aims to ensure that results from NCI-supported clinical trials are publicly available. This includes NCI-funded research grants, cooperative agreements, and/or contracts that support covered interventional clinical trials.

Review the NCI Clinical Trial Access Policy to learn about the policy’s expectations.

 

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