Increasing the transparency of clinical research data

Nature Publishing Group’s Scientific Data has just released a draft set of guidelines and recommendations to increase transparency of clinical research data while still protecting the privacy of individuals. The guidelines are the result of a working group of stakeholders from a diverse set of organisations (1), and are now being shared for public comment (2).

The Editors and Publishers invite Pistoia Alliance members to provide their comments and views, directly via the BioRxiv or to

Clinical research involving human participants presents challenges for any journal with policies on data sharing due to the frequent presence of personally identifiable information in clinical datasets. The guidelines include recommendations on linking published articles to datasets that are only available on request, and are potentially applicable to all medical journals, as well as data journals such as Scientific Data. Criteria by which clinical data repositories can be assessed have also been drafted.


2. Hrynaszkiewicz, I., Khodiyar, V., Hufton, A. & Sansone, S. A. Publishing descriptions of non-public clinical datasets: guidance for researchers, repositories, editors and funding organisations. BioRxiv (2015).

Posted in Pistoia Alliance Blog.

Leave a Reply

Your email address will not be published. Required fields are marked *