NIH Data Sharing Policies
PLEASE NOTE: As of July 2022, this page is no longer being actively maintained. For an up-to-date list of NIH policies, please visit NIH’s Scientific Data Sharing site.
This table provides a non-exhaustive list of some of the data sharing policies in effect at NIH. It includes policies at the NIH, IC, division, and program levels that apply to broad sets of investigators and data. Individual requests for applications (RFAs) and program announcements (PA) may specify other requirements or expectations for data sharing that apply to specific projects. Please refer to your IC or program for additional policies that may apply.
|IC||Data Sharing Policy Name||Description of Data Sharing Policy||Repositories|
|HEAL||HEAL Public Access and Data Sharing||Through the NIH HEAL Initiative Public Access and Data Sharing Policy (the Policy), NIH seeks to create an infrastructure that addresses the need for researchers, clinicians, and patients to collaborate on sharing their collective data and knowledge about opioid misuse and pain to provide scientific solutions to the opioid crisis. Under the Policy, applicants for extramural research funding (grants, cooperative agreements, contracts, and other transactions; "Applicants") for NIH HEAL Initiative Research Projects are required to submit a Public Access and Data Sharing Plan that (1) describes their proposed process for making resulting Publications and, to the extent possible, the Underyling Primary Data immediately and broadly available to the public or (2), if applicable, provides a justification to NIH if such sharing is not possible. Underlying Primary Data should be made as widely and freely available as possible while safeguarding the privacy of participants and protecting confidential and proprietary data.||NIH HEAL Initiative central data repository, or a non-NIH repository|
|NCI||Intramural Research Program 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). All IRP-supported investigators must develop an appropriate Data Sharing Plan (DSP) for each research activity involving human data.
|NCI||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.
Through the Cancer Moonshot Public Access and Data Sharing Policy (the "Policy"), NCI seeks to create an infrastructure that addresses the recommendation of the Blue Ribbon Panel’s Enhanced Data Sharing working group to the NCAB that researchers, clinicians, and patients collaborate in sharing their collective data and knowledge about cancer to accelerate progress towards improving cancer outcomes. The NCAB subsequently accepted this recommendation and recommended it to NCI.
|Genomic Data Commons, dbGaP, TCIA|
|NCI||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 at ensuring public availability of results from NCI-supported clinical trials from all NCI-funded research grants, cooperative agreements, and/or contracts that support covered interventional clinical trials. Review the NCI Clinical Trial Access Policy for expectations of the policy.||Clinical Trial Databases|
|NIH||NIH Policy on Deposit of Atomic Coordinates into Structural Databases||NIH policy requires that atomic coordinates from X-ray crystallographic and nuclear magnetic resonance experiments that were supported by NIH grants be deposited into the appropriate structural database at the time of submission of a research article drawing conclusions from these data.||Protein Data Bank|
|NHGRI||ENCODE Consortia Data Release, Data Use, and Publication Policies||Requires resource producers to release primary data along with an an initial interpretation, in the form of genome features, to the appropriate public databases as soon as the data is verified. Consortia members will also identify validation standards that will be applied in subsequent analyses of the data or with additional experimentation where appropriate. All data will be deposited to public databases, such as GenBank or the ENCODE/modENCODE Data Coordination Centers (DCCs) and these pre-publication data will be available for all to use.||ENCODE|
|NHGRI IC Wide Data Sharing Policy||Genomic Data Sharing Policy||Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
NHGRI encourages sharing of all data types. However, at this time the NIH GDS Policy and NHGRI implementation plans apply particularly to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data, or other molecular data produced by array-based technologies or high-throughput sequencing technologies.
Data pertinent to the interpretation of genomic data — such as associated phenotype data (e.g., clinical information relevant to the disease under study), exposure data, and descriptive information (e.g., protocols or methodologies used) — are expected to be shared.
|dbGaP, AnVIL, SRA, GEO, ClinVar, National Cancer Institute Genomic Data Commons, UniProt, FlyBase, Database at the European Bioinformatics|
|NIA||NIA Alzheimer's Disease Genomics Data Sharing Policy||The National Institutes of Health (NIH) advocates making available to the public the results and accomplishments of the activities that it funds. NIH assures that research resources developed with public funds become readily available to the broader research community in a timely manner for further research, development, application, and secondary data analysis in the expectation that this will lead to products and knowledge of benefit to the public health. Resources arising from NIH-funded research that are expected to be shared include data, biological materials, and pertinent methods of analysis. As an Institute of the NIH, the National Institute on Aging (NIA) follows the NIH policy that whenever possible research resources be made available to qualified investigators in a timely manner.||NCRAD, NIAGADS, Alzheimer's Disease Sequencing Project|
|NIH||Genomic Data Sharing Policy||Applies to NIH-funded research that generates large-scale human or non-human genomic data as well as the use of these data for subsequent research. Studies involving human genomic data are expected to be registered in dbGaP and submitted to an NIH-designated repository. To register a study in dbGaP and to submit to an NIH-designated repository, contact a Genomic Program Administrator (GPA). Large-scale non-human genomic data can be submitted to any widely used data repository.||
GPA (for dbGaP registration and data submission)
Frequently Used Repositories (for genomic data)
|NHLBI||NHLBI Policy for Data Sharing from Clinical Trials and Epidemiological Studies||Encourages all applicants to include a plan to address data sharing or to state why data sharing is not possible. For studies that meet the the following criteria, applicants are are required to provide a data sharing plan, which will be reviewed and approved by the relevant NHLBI program official: a) research applications/proposals requesting $500000 direct costs; b) research studies that have 500 or more participants c) ancillary studies based on NHLBI-funded parent studies d) applications/proposals submitted in response to FOAs that specify includsion of data sharing plans; or e) other research studies deemed appropriate for data sharing by NHLBI program official investigators.||NHLBI data repository, BioLINCC|
|NIA||Alzheimer's Disease Genetics Sharing Plan||NIA policy in the area of human Alzheimer’s disease genetics applies to all NIA funded research in this area regardless of cost. NIA follows the NIH GWAS Policy and extends NIA's existing policy on sharing data on Alzheimer's disease genetics to include secondary analysis of data resulting from a genome wide association study. It is the policy of the NIA that useful specimens and Associated Phenotypic Data for the genetics of late onset Alzheimer’s disease be deposited at the National Cell Repository for Alzheimer’s Disease (NCRAD) whenever possible. It is the policy of the NIA that all Genetic Data derived from NIA funded studies for the genetics of late onset Alzheimer’s disease be deposited at the National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) or another NIA approved site or both whenever possible. It is the policy of the NIA that all GWAS data, including secondary analysis data, derived from NIA funded studies for the genetics of late onset Alzheimer's disease be deposited at the NIH GWAS data repository (dbGaP) or another NIA approved site or both, wherever possible.||NCRAD, NIAGADS, dbGaP|
|NIA||Alzheimer’s Disease Neuroimaging Initiative (ADNI) Data Sharing and Publication Policy||The ADNI Executive Committee and the NIA expect that ADNI deidentified data will be made available to the general scientific community within a very short timeframe. ADNI recommends full, open access of all de-identified ADNI imaging and clinical data to indviduals who register with the ADNI and agree to the conditions in the "ADNI Data Use Agreement" and who undergo limited screening.||ADNI|
|NIAID||NIAID/DMID Data Sharing and Release Guidelines||Establishes general principles and specific guidelines for data release plans across NIAID/DMID Omics Centers including Genomic Sequencing Centers for Infectious Diseases (GSCID) and other NIAID-funded large scale Centers and projects. Indicates that plans should specify that genomic and other data types collected in NIAID-funded research will be submitted as rapidly as possible into publicly accessible and searchable international databases such as GenBank, dbGaP, the sequence read archive, the DMID Bioinformatics Resource Center, or other databases designated and approved by NIAID.||GSCID, DMID Bioinformatics Resource Center, Trace Archive or, as appropriate, to the Short Read Archive, dbGaP, dbSNP, BEI Resources Repository|
|NIAID||Data Sharing Guiding Principles for the NIAID/DMID Systems Biology Program||The NIAID/DMID Systems Biology Program (SBP) encourages center-wide joint sharing and analysis of data and can be accomplished by: 1) making raw data available to center investigators, including raw data where final analysis may not be complete, or 2) where feasible and to maximize information content generated by each center, analyses of samples should be performed with multiple -omics platforms, versus a single profiling technology. By SBP contract requirement, research data, protocols and computational and statistical models must be made freely and publicly available to the scientific community through the centers' websites or other public databases within four weeks of publication, or within one year of generation.||Systems Biology Program (SBP)|
|NIAID||Human Immunology Project Consortium Data Sharing Plan||HIPC investigators agree to deposit their data into the Immunology Database and Analysis Portal (ImmPort) system (www.Immport.org) according to a timeline determined together with the NIAID Program Officer for each study. To fulfill the HIPC data sharing objectives, the investigators will enter all study data and meta-data into ImmPort.||ImmPort|
|NIDA||NIDA Data Sharing Policy||Requires data for all NIDA-funded human genetics studies to be available for sharing, independent of direct costs, membership in the NIDA Genetics Consortium, or the type of genetics data generated.||NIDA Genetics Consortium, NIDA Center for Genetic Studies Repository|
|NIDA||Clinical Trials Network Data Share Policy||The NIH expects and supports the timely release and sharing of final research data from NIH-supported studies for use by other researchers to expedite the translation of research results into knowledge, products and procedures to improve human health. Data sets for CTN protocols will be available after (1) the primary paper has been accepted for publication, or (2) the data is locked for more than 18 months, whichever comes first.||CTN Data Share Website|
|NIDDK||The Environmental Determinants of Diabetes in the Young||All investigators who receive TEDDY resources must agree to acknowledge the TEDDY Study and the NIDDK central repository. This approach is fully compliant with the NIH public data sharing policy. That policy states that the NIH expects and supports the timely release and sharing of final research data from NIH-sponsored studies for use by other investigators and that the definition of “the timely release and sharing” to be no later than the acceptance for publication of the main findings from the final data set.||NIDDK Repository|
|NIH||NDAR Grantees Data Sharing Policy||All data resulting from this autism-related NIH-funded research involving human subjects are expected to be submitted to the National Database for Autism Research (NDAR), along with appropriate supporting documentation to enable efficient use of the data.||NDAR|
|NIH (BRAIN Initiative)||Data Sharing Policy for the BRAIN Initiative||The purpose of this notice is to inform prospective applicants and current awardees of a new policy concerning data collected with support from awards that are funded by the BRAIN Initiative. Specifically, this Notice clarifies the expectation that applicants to BRAIN Initiative funding opportunity announcements: 1) submit their data to one of the BRAIN data archives for sharing; 2) include specific required elements in the Resource Sharing Plan; and 3) include costs attributed to data preparation and submission to a data archive in grant applications.||Data Archive BRAIN Initiative, BossDB, Neuroscience Multi-omic Data Archive, Brain Image Library|
|NIH ICO (when applicable)||NIH Data Sharing Policy||The NIH data-sharing policy applies to applicants seeking $500,000 or more in direct costs in any year of the proposed research. The $500,000 threshold corresponds to the threshold set in the October 16, 2001 NIH Guide, where applicants requesting $500,000 or more in direct costs for any year must seek agreement by NIH Institute or Center (IC) staff to accept assignment of their application at least 6 weeks prior to the anticipated submission date.
The NIH policy on data sharing applies:
To the sharing of final research data for research purposes.
To basic research, clinical studies, surveys, and other types of research supported by NIH. It applies to research that involves human subjects and laboratory research that does not involve human subjects. It is especially important to share unique data that cannot be readily replicated.
To applicants seeking $500,000 or more in direct costs in any year of the proposed project period through grants, cooperative agreements, or contracts.
To research applications submitted beginning October 1, 2003.
|NIMH||Data Sharing Policy for the National Institute of Mental Health||Widespread data sharing by research communities adds significant value to research and accelerates the pace of discovery. The National Institute of Mental Health (NIMH) has established an informatics infrastructure to enable the responsible sharing and use of data collected from and about human subjects by the entire research community. Consistent with authorities under the 21st Century Cures Act, researchers who are funded by NIMH are required to deposit all raw and analyzed data (including, but not limited to, clinical, genomic, imaging, and phenotypic data) from experiments involving human subjects into this infrastructure.
Unless NIMH stipulates otherwise during the negotiation of the terms and conditions of a grant award, this Notice applies to all grant applications and awards that involve human subject research submitted after January 1, 2020 and applies to all Funding Opportunity Annoucements (FOAs) that NIMH participates in.
|OpenNeuro, dbGaP, NDA|
|NINDS||Sharing Data via the Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System||Investigators submitting FITBIR data are expected to: a) provide descriptive information about their studies, b) sumbit coded genotypic and phenotypic data to the FITBIR Informatics System; and c) submit a data submission for providing assurance that all data are submitted to the DOD and the NIH in accord with applicable laws and regulations, and that the identities of research participants will not be disclosed to the FITBIR Informatics System.||FITBIR|
|OD||INCLUDE Data Sharing Policy||Data sharing is a critical component of INCLUDE’s goal to accelerate discovery of etiology and biologic pathways underlying the comorbidities of Down syndrome. All recipients of INCLUDE funding are expected to share data with the wider research community as rapidly as feasible in alignment with the goals of the program. Consistent with the new NIH Policy for Data Management and Sharing (https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html), all applications, regardless of the amount of direct costs requested for any one year, are required to include a Data Management and Sharing Plan outlining how scientific data and any accompanying metadata will be managed and shared, regardless of whether the data are used to support scholarly publication. The plan should describe data types, file formats, submission timelines, and standards used in collecting or processing the data. It is expected that all de-identified human data generated by INCLUDE-funded projects will be submitted to NIH-designated repositories in coordination with the INCLUDE Data Coordinating Center (DCC).||INCLUDE Data Hub|
|OD||Kids First Data Sharing Policy||The Kids First program is Congressionally mandated to provide resources that will drive discovery in pediatric research (see Gabriella Miller Kids First Research Act). Datasets and resources generated by this program must be made as broadly shareable and accessible as is possible while abiding with informed consent language and protecting participants. In accordance with NIH’s mission and the Kids First program’s goals, increasing accessibility to data through broad sharing practices empowers researchers and accelerates scientific progress that can lead to improved diagnostic capabilities and targeted therapies.||Various repositories|
Last Reviewed: August 14, 2023