Science and Technology CommitteeFurther written evidence submitted by Cancer Research UK

The CancerHelp UK Clinical Trials Database is unique resource, providing information for the public about cancer trials and studies that recruit people in the UK.

Unlike trials registers which provide an internationally agreed set of data about the design, conduct and administration of clinical trials, the trial summaries on CancerHelp UK are written specifically with patients in mind.

The information is not intended to be as detailed as a Patient Information Sheet, as it is not part of the recruitment/consent process. But all summaries include information about the aims of the trial, who can take part, what taking part would mean—ie number of hospital visits and/or additional tests, and information about possible side effects. We conduct user testing and act on feedback to try to ensure the information is presented in an accessible and helpful way for our lay audience.

The summaries are written in plain English by our team of specialist nurses and all the information is reviewed and approved by the team or organisation running the trial before it is added to CancerHelp UK.

We aim to list all cancer trials and studies recruiting in the UK—not only those supported by Cancer Research UK. We currently have more than 1,500 studies listed on the site, including more than 500 trials that are open to recruitment, over 500 studies that are closed to recruitment but ongoing, and more than 400 trials with results.

We work with a wide range of organisations, including many pharmaceutical companies to prepare summaries of both open trials and of trial results.

The database was started more than a decade ago and initially only detailed trials that were open to recruitment. But in response to feedback we received from users, we started adding brief summaries of trial results when we redesigned the website in 2009.

Since then, we have added more than 400 results summaries. About 18% of these are pharma trials—percentages are approximate as the number of trials on the database (and their current status) changes on an almost daily basis.

Of the 83 results summaries we added during the course of 2012, 15 were sponsored by pharmaceutical companies, 25 were for studies that had received funding from Cancer Research UK.

There are currently 50 closed trials listed on the database that do not have a full summary of results. We have added a brief explanation of why this is. For example, 41 of these trials were not able to recruit enough people, or were stopped early for other reasons. Out of the 400 results summaries we currently have in total, there are only nine trials listed for which we have been unable to obtain results or have a results summary approved.

The length of time between a trial closing to recruitment and us being able to add a summary of results varies enormously. There are some trials listed that closed to recruitment a number of years ago. We will have been in touch with the trial team about adding results, and may now be waiting for analysis to be completed or for a paper to be published. We can sometimes base a summary on an end of study report or a conference abstract, but if results are being published, we may not be able to add details to CancerHelp UK until the publication date has passed.

By working with teams that are involved in running clinical trials, we produce intentionally brief summaries that accurately reflect the findings of a trial and provide useful, easily understandable information for the public.

Cancer Research UK is committed to providing information for the public about cancer trials and their results. We are dependent on trial teams, including clinical researchers, academics and pharmaceutical companies working with us in a timely fashion in order to be able to do this.

May 2013

Prepared 16th September 2013