Open Access: Open Data

What is open data?

A definition of open data from SPARC, a non-profit advocacy organization for Open Content is as follows:

Open Data is research data that:

Is freely available on the internet;

Permits any user to download, copy, analyze, re-process, pass to software or use for any other purpose; and

Is without financial, legal, or technical barriers other than those inseparable from gaining access to the internet itself.

Open Data typically applies to a range of non-textual materials, including datasets, statistics, transcripts, survey results, and the metadata associated with these objects. The data is, in essence, the factual information that is necessary to replicate and verify research results. Open Data policies usually encompass the notion that machine extraction, manipulation, and meta-analysis of data should be permissible.¹

1. SPARC, licensed under CC-BY 4.0 and available at https://sparcopen.org/open-data/.

Strategies and Best Practices for Sharing Data

Best practices for creating reusable Dryad data packages
These best practices from Dryad are applicable to sharing data in any repository.
De-Identification: Software and Test Data
This de-identification guide from PhysioNet provides a free, open source software tool to aid in the removal of protected health information from medical records.
How To Open Data
Tips and a handbook about open data from Open Knowledge International.
Sharing Clinical Trial Data
This free eBook provides strategies for sharing clinical trial data appropriately.

Data Repository Directories

Data Repositories by Subject
This list from the Open Access Directory allows you to browse data repositories by discipline, including medicine.
re3data.org
re3data.org is a registry of research data repositories. It is not a repository itself, but you can search it or browse by subject to find a data repository that matches your research needs.
Selected List of Repositories
Nature has compiled a list of recommended data repositories, as they require their authors to submit data along with their publications. The list can be browsed by subject area.

Selected Data Repositories

The following lists contain some selected open data repositories.

Government Data

Open Baltimore
Open data from the City of Baltimore
Maryland Open Data
Maryland's Open Data Portal
Data.gov
The home of the U.S. Government’s open data
Healthdata.gov
Open data from the US Department of Health and Human Services
Census Data
Open data from the US Census Bureau

Generalist Repositories

Dryad
Dryad is a repository for scientific and medical data. Payment is required to submit data but not to search for or use data already in the repository.
Figshare
Figshare is a general repository that allows you to upload and share any type of data in any file format. You can also search it to find existing materials. Up to 20 GB of storage is included in the free version.
Harvard Dataverse
Harvard Dataverse is a general data repository. You do not have to be affiliated with Harvard to create an account and submit data.
OSF
OSF is a collaborative, project management tool where you can store data and other components of your research. Login with your UMB credentials.
Zenodo
Zenodo is a repository based in the EU at CERN (home of the Large Hadron Collider), but accepts all research outputs from all disciplines and all users.

Domain-Specific Repositories

Biological Magnetic Resonance Data Bank
BMRB is a repository for nuclear magnetic resonance (NMR) imaging data.
The Cancer Imaging Archive (TCIA)
TCIA is an archive of medical images relating to cancer. TCIA provides support for de-identification of the images as part of their submission process.
Coherent X-ray Imaging Data Bank
CXIDB is a repository for coherent x-ray imaging data.
ImmPort
ImmPort is a repository for data relating to bioinformatics in immunology.
OpenICPSR
A service of the Inter-university Consortium for Political and Social Research (ICPSR), openICPSR is a self-publishing repository for social, behavioral, and health sciences research data.
OpenNeuro
OpenNeuro is a repository for neuroimaging data.
PhysioBank
PhysioBank is a collection of repositories for physiological data including recordings of waveform signals such as ECG.

UMB Data Catalog

UMB Data Catalog
The UMB Data Catalog is a searchable collection of records of data sets from UMB researchers. It does not store any actual data sets, but provides information about them as well as how to get access. Many of the data sets are freely available, but some require permission. You can search existing records or submit details of your own data for inclusion in the catalog.
Introduction to the UMB Data Catalog
A 7-minute video introduction to the UMB Data Catalog.

Government Resources

Data.gov
Data.gov is a catalog of open data from the U.S. government. Like the UMB Data Catalog mentioned above, it describes data sets rather than storing them. If you find a data set you want to use, the Data.gov record will link you to where it is stored or connect you with the person or entity who can give it to you.
data.HRSA.gov
data.HRSA.gov is a collection of data and other resources from the Health Resources and Services Administration. You can search and download data sets as well as create visualizations using a map builder tool.
Federal Article and Data Sharing Policies
This resource from SPARC allows you to browse the article and data sharing requirements of various federal agencies.
HHS Guidance on De-Identifying Health Data
This page is the Department of Health and Human Service's guide on de-identifying protected health information (PHI) from data in accordance with HIPAA rules.