A list of NIH-supported repositories that accept submissions of appropriate scientific research data from biomedical researchers. It includes resources that aggregate information about biomedical data and information sharing systems. Links are provided to information about submitting data to and accessing data from the listed repositories. Additional information about the repositories and points-of contact for further information or inquiries can be found on the websites of the individual repositories.

A listing of NIH supported data sharing repositories that make data accessible for reuse. Most accept submissions of appropriate data from NIH-funded investigators (and others), but some restrict data submission to only those researchers involved in a specific research network. Also included are resources that aggregate information about biomedical data and information sharing systems. The table can be sorted according by name and by NIH Institute or Center and may be searched using keywords so that you can find repositories more relevant to your data. Links are provided to information about submitting data to and accessing data from the listed repositories. Additional information about the repositories and points-of-contact for further information or inquiries can be found on the websites of the individual repositories.

BRADS is a repository for data and biospecimens from population health research initiatives and clinical or interventional trials designed and implemented by NICHD’s Division of Intramural Population Health Research (DIPHR). Topics include human reproduction and development, pregnancy, child health and development, and women’s health. The website is maintained by DIPHR.

This dataset tracks the updates made on the dataset "NIH Data Sharing Repositories" as a repository for previous versions of the data and metadata.

Repository to make datasets resulting from NIH funded research more accessible, citable, shareable, and discoverable. Data submitted will be reviewed to ensure there is no personally identifiable information in data and metadata prior to being published and in line with FAIR -Findable, Accessible, Interoperable, and Reusable principles. Data published on Figshare is assigned persistent, citable DOI (Digital Object Identifier) and is discoverable in Google, Google Scholar, Google Dataset Search, and more.Complited on July,2020. Researches can continue to share NIH funded data and other research product on figshare.com.

Repository to make datasets resulting from NIH funded research more accessible, citable, shareable, and discoverable. Data submitted will be reviewed to ensure there is no personally identifiable information in data and metadata prior to being published and in line with FAIR -Findable, Accessible, Interoperable, and Reusable principles. Data published on Figshare is assigned persistent, citable DOI (Digital Object Identifier) and is discoverable in Google, Google Scholar, Google Dataset Search, and more.Complited on July,2020. Researches can continue to share NIH funded data and other research product on figshare.com.

"The NICHD Data and Specimen Hub (DASH) is a centralized resource that allows researchers to share and access de-identified data from studies funded by NICHD. DASH also serves as a portal for requesting biospecimens from selected DASH studies.".

This dataset is associated with the following publication: Deluca, N., K. Thomas, A. Mullikin, R. Slover, L. Stanek, D. Pilant, and E. Hubal. Geographic and demographic variability in serum PFAS concentrations for pregnant women in the United States. Journal of Exposure Science and Environmental Epidemiology. Nature Publishing Group, London, UK, 33(1): 710-724, (2023).

This blog post was posted by Elizabeth Kittrie on July 21, 2016 It was written by Elizabeth Kittrie and Shubham Chattopadhyay.

Objective To characterise experiences using clinical research data shared through the National Institutes of Health (NIH)'s Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) clinical research data repository, along with data recipients’ perceptions of the value, importance and challenges with using BioLINCC data. Design and setting Cross-sectional web-based survey. Participants All investigators who requested and received access to clinical research data from BioLINCC between 2007 and 2014. Main outcome measures Reasons for BioLINCC data request, research project plans, interactions with original study investigators, BioLINCC experience and other project details. Results There were 536 investigators who requested and received access to clinical research data from BioLINCC between 2007 and 2014. Of 441 potential respondents, 195 completed the survey (response rate=44%); 89% (n=174) requested data for an independent study, 17% (n=33) for pilot/preliminary analysis. Commonly cited reasons for requesting data through BioLINCC were feasibility of collecting data of similar size and scope (n=122) and insufficient financial resources for primary data collection (n=76). For 95% of respondents (n=186), a primary research objective was to complete new research, as opposed to replicate prior analyses. Prior to requesting data from BioLINCC, 18% (n=36) of respondents had contacted the original study investigators to obtain data, whereas 24% (n=47) had done so to request collaboration. Nearly all (n=176; 90%) respondents found the data to be suitable for their proposed project; among those who found the data unsuitable (n=19; 10%), cited reasons were data too complicated to use (n=5) and data poorly organised (n=5). Half (n=98) of respondents had completed their proposed projects, of which 67% (n=66) have been published. Conclusions Investigators were primarily using clinical research data from BioLINCC for independent research, making use of data that would otherwise have not been feasible to collect.

The public sharing of primary research datasets potentially benefits the research community but is not yet common practice. In this pilot study, we analyzed whether data sharing frequency was associated with funder and publisher requirements, journal impact factor, or investigator experience and impact. Across 397 recent biomedical microarray studies, we found investigators were more likely to publicly share their raw dataset when their study was published in a high-impact journal and when the first or last authors had high levels of career experience and impact. We estimate the USA's National Institutes of Health (NIH) data sharing policy applied to 19% of the studies in our cohort; being subject to the NIH data sharing plan requirement was not found to correlate with increased data sharing behavior in multivariate logistic regression analysis. Studies published in journals that required a database submission accession number as a condition of publication were more likely to share their data, but this trend was not statistically significant. These early results will inform our ongoing larger analysis, and hopefully contribute to the development of more effective data sharing initiatives. Earlier version presented at ASIS&T and ISSI Pre-Conference: Symposium on Informetrics and Scientometrics 2009

Over the last decade, there have been significant changes in data sharing policies and in the data sharing environment faced by life science researchers. Using data from a 2013 survey of over 1600 life science researchers, we analyze the effects of sharing policies of funding agencies and journals. We also examine the effects of new sharing infrastructure and tools (i.e., third party repositories and online supplements). We find that recently enacted data sharing policies and new sharing infrastructure and tools have had a sizable effect on encouraging data sharing. In particular, third party repositories and online supplements as well as data sharing requirements of funding agencies, particularly the NIH and the National Human Genome Research Institute, were perceived by scientists to have had a large effect on facilitating data sharing. In addition, we found a high degree of compliance with these new policies, although noncompliance resulted in few formal or informal sanctions. Despite the overall effectiveness of data sharing policies, some significant gaps remain: about one third of grant reviewers placed no weight on data sharing plans in their reviews, and a similar percentage ignored the requirements of material transfer agreements. These patterns suggest that although most of these new policies have been effective, there is still room for policy improvement.

Participants responses regarding the updated NIH Data Management and Sharing Policyb'*'.

BRADS is a repository for data and biospecimens from population health research initiatives and clinical or interventional trials designed and implemented by NICHD’s Division of Intramural Population Health Research (DIPHR). Topics include human reproduction and development, pregnancy, child health and development, and women’s health. The website is maintained by DIPHR.

Clinical trial participants are often motivated by the altruistic assumption that study results will contribute to medical knowledge. Additionally, the sharing of research data is rapidly developing into an ethical standard. An evaluation of 144 blank (sample) informed consent forms (ICF) was undertaken to determine the extent to which clinical trial participants were apprised of researchers’ intent to publish results, share de-identified data, and the overall benefit to medical knowledge. This dataset consists of 98 ICFs from industry-funded trials from the European Medicines Agency (EMA) and 46 ICFs from publicly-funded trials listed in the National Heart, Lung and Blood Institute (NHLBI) Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC). The documents were reviewed for identification and extraction of stated or implied language for the following 5 aspects of each study: publication of results, sharing de-identified data, data ownership, confidentiality of identifiable data and, whether the trial will produce knowledge that offers public benefit. Results indicate that investigators rarely disclose intent to share de-identifiable data or commitment to publish. All ICFs are available via 2 zip files, one for the industry-funded trials and the other for the trials in BioLINCC. Also included is the study extraction sheet.

The National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) is a national genetics data repository facilitating access to genotypic and phenotypic data for Alzheimer's disease (AD). Data include GWAS, whole genome (WGS) and whole exome (WES), expression, RNA Seq, and CHIP Seq analyses. Data for the Alzheimer’s Disease Sequencing Project (ADSP) are available through a partnership with dbGaP (ADSP at dbGaP). Results are integrated and annotated in the searchable genomics database that also provides access to a variety of software packages, analytic pipelines, online resources, and web-based tools to facilitate analysis and interpretation of large-scale genomic data. Data are available as defined by the NIA Genomics of Alzheimer’s Disease Sharing Policy and the NIH Genomics Data Sharing Policy. Investigators return secondary analysis data to the database in keeping with the NIAGADS Data Distribution Agreement.

Uploading on behalf of many Tribal colleagues, this letter urges NIH to consider Tribal sovereignty in the funding, design, and management of the RADx-UP Tribal Data Repository.

This dataset outlines a proposed set of core, minimal metadata elements that can be used to describe biomedical datasets, such as those resulting from research funded by the National Institutes of Health. It can inform efforts to better catalog or index such data to improve discoverability. The proposed metadata elements are based on an analysis of the metadata schemas used in a set of NIH-supported data sharing repositories. Common elements from these data repositories were identified, mapped to existing data-specific metadata standards from to existing multidisciplinary data repositories, DataCite and Dryad, and compared with metadata used in MEDLINE records to establish a sustainable and integrated metadata schema. From the mappings, we developed a preliminary set of minimal metadata elements that can be used to describe NIH-funded datasets. Please see the readme file for more details about the individual sheets within the spreadsheet.

The National Database for Clinical Trials Related to Mental Illness (NDCT) is an extensible informatics platform for relevant data at all levels of biological and behavioral organization (molecules, genes, neural tissue, behavioral, social and environmental interactions) and for all data types (text, numeric, image, time series, etc.) related to clinical trials funded by the National Institute of Mental Health. Sharing data, associated tools, methodologies and results, rather than just summaries or interpretations, accelerates research progress. Community-wide sharing requires common data definitions and standards, as well as comprehensive and coherent informatics approaches for the sharing of de-identified human subject research data. Built on the National Database for Autism Research (NDAR) informatics platform, NDCT provides a comprehensive data sharing platform for NIMH grantees supporting clinical trials.

RDoCdb supports the Research Domain Criteria Initiative (RDoC), which calls for the development, for research purposes, of new ways of classifying psychopathology based on dimensions of observable behavior and neurobiological measures by providing the research community a data repository for the sharing of research data related to this initiative.

National Database for Autism Research (NDAR) is an extensible, scalable informatics platform for autism spectrum disorder-relevant data at all levels of biological and behavioral organization (molecules, genes, neural tissue, behavioral, social and environmental interactions) and for all data types (text, numeric, image, time series, etc.). NDAR was developed to share data across the entire ASD field and to facilitate collaboration across laboratories, as well as interconnectivity with other informatics platforms. NDAR Homepage: http://ndar.nih.gov/