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.

This dataset aggregates information about 191 research data repositories that were shut down. The data collection was based on the registry of research data repositories re3data and a comprehensive content analysis of repository websites and related materials. Documented in the dataset are the period in which a repository was active, the risks resulting in its shutdown, and the repositories taking over custody of the data after.

The goal of BioLINCC is to facilitate and coordinate the existing activities of the NHLBI Biorepository and the Data Repository and to expand their scope and usability to the scientific community through a single web-based user interface.

This file collection is part of the ORD Landscape and Cost Analysis Project (DOI: 10.5281/zenodo.2643460), a study jointly commissioned by the SNSF and swissuniversities in 2018.

Please cite this data collection as: von der Heyde, M. (2019). Data from the International Open Data Repository Survey. Retrieved from https://doi.org/10.5281/zenodo.2643493

Further information is given in the corresponding data paper: von der Heyde, M. (2019). International Open Data Repository Survey: Description of collection, collected data, and analysis methods [Data paper]. Retrieved from https://doi.org/10.5281/zenodo.2643450

Contact

Swiss National Science Foundation (SNSF)

Open Research Data Group

E-mail: ord@snf.ch

swissuniversities

Program "Scientific Information"

Gabi Schneider

E-Mail: isci@swissuniversities.ch

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 file collection is part of the ORD Landscape and Cost Analysis Project (DOI: 10.5281/zenodo.2643460), a study jointly commissioned by the SNSF and swissuniversities in 2018.

Please cite this data collection as:
von der Heyde, M. (2019). Data and tools of the landscape and cost analysis of data repositories currently used by the Swiss research community. Retrieved from https://doi.org/10.5281/zenodo.2643495

Connected data papers are:
von der Heyde, M. (2019). Open Data Landscape: Repository Usage of the Swiss Research Community: Description of collection, collected data, and analysis methods [Data paper]. Retrieved from https://doi.org/10.5281/zenodo.2643430
von der Heyde, M. (2019). International Open Data Repository Survey: Description of collection, collected data, and analysis methods [Data paper]. Retrieved from https://doi.org/10.5281/zenodo.2643450

Connected data sets are:
von der Heyde, M. (2019). Data from the Swiss Open Data Repository Landscape survey. Retrieved from https://doi.org/10.5281/zenodo.2643487
von der Heyde, M. (2019). Data from the International Open Data Repository Survey. Retrieved from https://doi.org/10.5281/zenodo.2643493

Contact

Swiss National Science Foundation (SNSF)

Open Research Data Group

E-mail: ord@snf.ch

swissuniversities

Program "Scientific Information"

Gabi Schneider

E-Mail: isci@swissuniversities.ch

The NIH Common Data Elements (CDE) Repository has been designed to provide access to structured human and machine-readable definitions of data elements that have been recommended or required by NIH Institutes and Centers and other organizations for use in research and for other purposes. Visit the NIH CDE Resource Portal for contextual information about the repository.

Dryad BioLINCC Survey Data 16-09-01This is the deidentified data from the 2015 cross-sectional survey of investigators who requested and received access to clinical research data from BioLINCC between 2007 and 2014.READ ME Dryad BioLINCC Survey 16-09-01.txtData Dictionary BioLINCC Survey 16-09-01This file lists and describes the variables from the 2015 cross-sectional BioLINCC survey.

In order to better understand the factors that most influence where researchers deposit their data when they have a choice, we collected survey data from researchers who deposited phylogenetic data in either the TreeBASE or Dryad data repositories. Respondents were asked to rank the relative importance of eight possible factors. We found that factors differed in importance for both TreeBASE and Dryad, and that the rankings differed subtly but significantly between TreeBASE and Dryad users. On average, TreeBASE users ranked the domain specialization of the repository highest, while Dryad users ranked as equal highest their trust in the persistence of the repository and the ease of its data submission process. Interestingly, respondents (particularly Dryad users) were strongly divided as to whether being directed to choose a particular repository by a journal policy or funding agency was among the most or least important factors. Some users reported depositing their data in multiple repositories and archiving their data voluntarily.

This paper reports on a study exploring 'metadata capital' acquired via metadata reuse. Collaborative modeling and content analysis methods were used to study metadata capital in the Dryad data repository. A sample of 20 cases for two Dryad metadata workflows (Case A and Case B) consisting of 100 instantiations (60 metadata objects, 40 metadata activities) was analyzed. Results indicate that Dryad's overall workflow builds metadata capital, with the total metadata reuse at 50% or greater for 8 of 12 metadata properties, and 5 of these 8 properties showing reuse at 80% or higher. Metadata reuse is frequent for basic bibliographic properties (e.g., author, title, subject), although it is limited or absent for more complex scientific properties (e.g., taxon, spatial, and temporal information). This paper provides background context, reports the research approach and findings, and considers research implications and system design priorities that may contribute to metadata capital—long term.

The attached data sets provides an overview of the landscape of research data repositories in 2015. They are based on an analysis of the re3data - registry of research data repositories from December 2015.

BioGRID is an online interaction repository with data on raw protein and genetic interactions from major model organism species. All interaction data are freely provided through our search index and available via download in a wide variety of standardized formats.

These are the supplementary materials for the article "Actually Accessible Data: An Update and a Call to Action." The project contains three files:

Colon-Karcher-Goben_Accessibility-of-Popular-Data-Repositories.xlsx shows the results of automated accessibility checks of seven popular data repositories in the United States and Europe. For each repository a search or browse page as well as a typical dataset landing page were selected and checked with two prominent accessibility tools AXE (https://www.deque.com/axe/) and WAVE (https://wave.webaim.org/). Checks were initially performed in Spring 2022. The reported (mostly unchanged) results are from tests on April 25, 2023. They were performed using Firefox 112.0.2 for Windows with both browser add-ons installed, AXE v. 4.6.3, WAVE v. 3.2.

Colon-Goben-Karcher_Acessibility-FLOSS-Repositories.xlsx describes the treatment of digital accessibility in the developer-oriented documentation of six popular open-source (data) repository software projects. The project documentation was reviewed by two researchers with a background in open source software (Karcher as well as a graduate assistant at the Qualitative Data Repository) who looked for specific sections on accessibility and also used search terms to identify relevant sections. This document reflects the status as of April 2022.

Colon-Goben-Karcher_Search-Strategies.docx Briefly discusses the literature search strategies conducted for relevant literature. Initial searches in Google Scholar and Scopus were performed in March-April 2022. Additional searches in LISTA are from March-April 2023.

"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).

The Metabolomics Program's Data Repository and Coordinating Center (DRCC), housed at the San Diego Supercomputer Center (SDSC), University of California, San Diego, has developed the Metabolomics Workbench. MetWB will serve as a national and international repository for metabolomics data and metadata and will provide analysis tools and access to metabolite standards, protocols, tutorials, training, and more.

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.

Biospecimen requests and disposition, by website year, and research type for fulfilled requests.

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.

Requestor characteristics by website year.

Repository to store and access de-identified data from NICHD funded research studies for purposes of secondary research use. It serves as mechanism for NICHD-funded extramural and intramural investigators to share research data from studies in accordance with NIH Data Sharing Policy and NIH Genomic Data Sharing Policy.