This morning NICE launched a new ‘quality standard’ on children and young people with cancer. One of its key recommendations is a call for all children and young people with cancer to have the opportunity to take part in relevant clinical trials.
Quality standards are aimed at health professionals, commissioners, patients, service providers and others in a position to help improve care. The full new standard on children and young people with cancer is
available online here.
The importance of trials
Here at The Institute of Cancer Research in London we are among the world leaders at paediatric cancer research. As part of that work, we and our hospital partner The Royal Marsden are involved in several ongoing clinical trials of new drugs in children, including the
BEACON trial in children with relapsed neuroblastoma which - in collaboration with the Innovative Therapy for Children with Cancer (ITCC) and the International Society of Paediatric Oncology European Neuroblastoma Group (SIOPEN) - launched last year.
The need for more clinical trials is clear: as our Chief Executive Alan Ashworth said this morning
in response to the new NICE standard (for those without a login to the Times, NICE's press release is
available here),
“some childhood cancers remain incurable, and even among children who survive there are high rates of long-term side-effects. The only way to develop new and better treatments for children with cancer is to run more paediatric cancer trials.”
EU loophole
But it is not as straightforward as it should be to run clinical trials, as Professor Ashworth says. In order to improve access to clinical trials for children we need to address the regulatory and financial barriers to running them.
One of those barriers, as we
said earlier this month, is a loophole in EU rules that allows pharmaceutical companies to avoid testing new drugs in children. Even when evidence shows that a drug developed for an adult cancer might work in children too, companies are able to seek ‘waivers’ from regulators that mean children are denied access to these drugs. We are now calling on the European Commission – which is reviewing the current system at the moment – to close that loophole to make it easier for researchers, including those here at the ICR and The Royal Marsden, to try out new potential treatments in children.
For more on the issue of improving access to drugs for childhood clinical trials see
this recent post by my colleague Eva Sharpe, and
this one by Professor Ashworth.
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