Delivering a step change in children’s cancer trials

The report was the result of a two-year project from the Nuffield Council, bringing together experts from different areas of paediatric research, as well as charities and young people themselves.

 ‘Involving children and young people in health research – getting it right’ is quite a hefty 265 pages, but they’ve done a great job of making a magazine-style version with all the key messages.

One of the most interesting projects I’ve been working on over the last couple of years here at The Institute of Cancer Research has been around how we can make the kind of advances we’ve been seeing in adult cancer treatments in children, by clearing some of the hurdles researchers face in getting drugs into paediatric clinical trials.

If you follow our blog you might have seen some of the work that we’ve done on this, calling for a change in the way that EU policy on children’s cancer is implemented. The ICR believes that the current system is denying children access to the latest cancer drugs and has highlighted what we consider a missed opportunity to address the issue.

I was really pleased to see that the Nuffield Council picked up on some of these messages, urging the European Medicines Agency to review the class waiver system as a matter of urgency to ensure drugs are evaluated in children whenever there is evidence they could work.

At the report’s launch, the Chair of the project’s working group asked organisations to pick up the recommendations and look at practical ways of taking them forward, giving continuing life to the project.

We’ll certainly be thinking about our next steps to take this work forward.  Last year the ICR worked closely with UK MEP Glenis Willmott, who has been a strong supporter of changing the EU Regulation to increase the number of trials available for children with cancer.

She has asked the European Commission repeatedly about what it will be doing to change the system, most recently in this question where she asked whether it would consider bringing forward the date it is set to review the Regulation.

She is also organising a meeting of the Health Working Group, a forum for MEPs to discuss issues that affect the health of Europe’s citizens, to discuss the issue.

The other main focus of the report was that research needs to be done with children rather than on children, with recommendations about bringing children into all stages of trial design and review, as well as supporting them to have more say in their participation in trials.

The working group had already put this principal into action, with an enormous amount of input from children and young people into the project, including several workshops with children and young people for them to discuss the ethics of research studies. Lots of these discussions were captured on film and are worth a watch if you’re interested. Some of the young participants with plenty to say came along to present at the event and it was easy to see the value of these discussions.

I’ll be interested to see what comes of the report and the recommendations, and we’ll continue to do what we can to bring more clinical trials to children with cancer.