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Trans-NIH BioMedical Informatics Coordinating Committee (BMIC)

NIH Data Sharing Policies

This table lists 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.

ICData Sharing Policy NameDescription of Data Sharing PolicyRepositories
NIH NIH Data Sharing Policy Expects investigators seeking more than $500K in direct support in any given year to submit a data sharing plan with their application or to indicate why data sharing is not possible. No specific repository listed
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
NIH Genomic Data Sharing Policy Expects that large-scale genomic research data from NIH-funded studies involving human specimens, as well as non-human and model organisms, will be shared through a publicly available data repository. All studies with human genomic data should be registered in dbGaP, and the data should be submitted to an NIH-designated data repository.  Non-human data may be submitted to any widely used data repository.

dbGaP (for registration)

NIH-designated data repository (for data)
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
NIH NIH Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) Expects all investigators who receive NIH support to conduct genome-wide analysis of genetic variation in a study population to submit to the NIH GWAS data repository descriptive information about their studies for inclusion in an open access portion of the NIH GWAS data repository. Strongly encourages the submission of curated and coded phenotype, exposure, genotype, and pedigree data, as appropriate, to the NIH GWAS data repository as soon as quality control procedures have been completed at the local institution. These detailed data will be made available through a controlled access process according to the GWAS Data Access procedures. dbGaP
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
NICHD Revised Resource Sharing Plan Instructions for Genetic Screens to Enhance Zebrafish Research and Enhancing Zebrafish Research with Research Tools and Techniques (PAR-08-138 and PAR-08-139) Regardless of the amount requested, investigators are expected to include a brief 1-paragraph description of how final research data will be shared, or explain why data-sharing is not possible. Applicants are encouraged to discuss data-sharing plans with their NIH program contact. When preparing their Resource Sharing Plan, participants are strongly encouraged to contact the Zebrafish International Resource Center (ZIRC, http://zfin.org/zirc/home/stckctr.php) to discuss their plans for sharing resources created under their proposed application and to receive a cost estimate for deposition of materials at ZIRC. Plans to share materials generated by projects under the FOA through ZIRC, including but not limited to mutant fish, embryos, and sperm, genetic screens, mutagenesis protocols, mutagenesis vector constructs, and genetic and phenotypic data for all mutant strains, should include evidence/documentation of coordination with staff at the Resource. A reasonable time frame for periodic deposition of mutants, sperm, reagents, and data should be specified in the application and will be considered during the review of the plan for sharing. Zebrafish International Resource Center (ZIRC)
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
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
ORDR The Collaboration, Education, and Test Translation (CETT) Program's Guidelines for Data Collection and Sharing Specifies that de-identified clinical data will be submitted and stored at the NIH for future distribution for research purposes. To facilitate the widest access to data, CETT Collaborative teams agree to the following principles: a) follow de-identification procedures defined within the GWAS policy b) develop procedures and educational/informational documents and c) de-identified clnical data will be submitted and stored at the NIH for future distribution for research purposes. dbGaP