Resources | Finding controlled-access repositories

Published in Research Data
Resources | Finding controlled-access repositories
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Research articles discuss results and make claims based upon data. Sharing data benefits: (i) the researchers who generated the data (increased citation), (ii) the research community (reuse of data, validation of results) and (iii) society (medicine/product/solution development).

Governments, funders and publishers are increasingly mandating data sharing. However, when data contain sensitive elements, sharing them with unrestricted access may not be possible. In such cases, controlled-access (aka restricted/protected-access) repositories offer a solution.

This blog focuses on finding an appropriate controlled-access repository for your data. See this OpenAIRE guide for more information on what constitutes sensitive data, and this UK Data Service page for information on anonymising data.

Know the repositories for your field
If data sharing is common in your field, it is likely that particular repositories are more frequently used. You can identify these by reviewing recent Articles, which are likely to have a Data Availability Statement (aka 'Data access statement' or 'Availability of data and materials') which you can quickly check to see where the data are.

Mandated data types
In some research areas, particularly biomedical, there are well-established controlled-access data repositories that house certain data types. Furthermore, there may be a mandate to share data in one of these repositories. The most common sensitive data type encountered at Springer Nature biomedical journals is human genetic sequence data, including genotype-phenotype data, and these must be deposited in one of the following controlled-access repositories: dbGaP, EGA, GSA-Human.

Institutional controlled-access
Institutions often run their own data repositories, and may offer controlled-access for sensitive data. Your institution's librarians or research data manager will be able to advise you.

General search via registries
The Registry of Research Repositories at re3data.org allows you to filter your search to 'Data access' = 'restricted', and then apply additional filters such as 'subjects', 'content types', 'keywords', etc. 

Clinical trials data
There are numerous controlled-access data repositories for data produced from different kinds of clinical trials. At the time of writing (Feb 2023), filtering a re3data.org search for restricted access and ‘clinical trials’ yielded 25 results. This table (from this 2016 Article) lists controlled-access repositories for clinical trials. A more recent and in-depth investigation into repositories for clinical trial data can be found in this 2019 Article, though their list of repositories is not limited to controlled-access. Finally, the Yale Open Data Access project and Clinical Study Data Request offer alternative solutions to controlled-access repositories--rather than storing the data themselves, they facilitate interactions between the researchers/industry sponsors who generated the data and those wishing to access them.

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