New guidelines for how to share data from publicly funded clinical trials have gained the support of the UK Government’s health research funding body, the National Institute for Health Research (NIHR).

Data sharing makes clinical trials more useful to researchers. The contribution made by clinical trial participants can be put to greater use and unnecessary duplicate trials can be prevented. The new guide aims to help make these data available for additional research, while maintaining the privacy and confidentiality of individual patients.

The guide provides a series of practical principles for sharing anonymised individual patient data. It recommends simple steps to follow prior to trial funding, during trial set-up, and describes how to prepare for data sharing at the end of a trial.

Sir Iain Chalmers, coordinator of the James Lind Initiative and co-founder of AllTrials campaign, said:

“The National Institute for Health Research has yet again adopted an exemplary policy to promote greater value from public investment in clinical research. The Institute’s example is in striking contrast to continuing efforts by some elements within the commercial research sector to withhold research evidence from the public. My longstanding view is that patients invited to consider participating in clinical trials should refuse to do so unless they receive reassurance that the existence and the results of the studies will be made public.”

The NIHR announcement follows a recent report from the US’s Institute of Medicine, which says “data sharing should become the norm”.

This new guidance has been endorsed by Cancer Research UK, MRC Methodology Research Programme Advisory Group, Wellcome Trust and the UKCRC Registered CTUs Network, all of whom are AllTrials supporters.

What is your organisation doing to support the AllTrials campaign? Are you planning to implement these new recommendations? We would love to discuss what you and the 570+ organisations supporting AllTrials can do to help drive the campaign forward. Contact us to find out more.