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People who don’t have one of the “big four” most common cancers – breast, bowel, lung or prostate – may feel that their disease gets less attention from the media and a smaller chunk of research funding. But rarer cancers present unique research challenges and, behind the scenes, many scientists and clinicians are looking for ways to improve this situation.

At the NCRI Cancer Conference a session devoted to discussing these issues attracted a varied audience, including many people who had been treated for a rare type of cancer, as well as clinicians and policy makers.

One major problem that researchers face is actually finding enough people with the disease to run a clinical trial – the ‘gold standard’ by which new ways to diagnose and treat cancer are tested before being adopted more widely.

Better trial design
A talk by Lucinda Billingham from the Cancer Research UK Clinical Trials Unit in Birmingham, prompted a lively discussion. She gave an exciting glimpse into the future of trials for rare cancers – using Bayesian statistics!  It’s a complex topic but the bottom line is that she believes that by taking a broader approach to designing clinical trials, researchers can get the evidence they need to get new treatments for rare cancers into the clinic.

For example, smaller trials might be possible if researchers keep trials very simple, and incorporate information from other published research, observations and trials to strengthen their analysis. Lucinda is currently trying to apply these ideas to design a trial for Merkel cell cancer. This bold approach will need to be supported by funding groups and the journals that actually publish the research – but there is evidence these ideas are gaining support from these groups.

International collaboration
Jean-Yves Blay from the French University Claud Bernard emphasised the need for collaboration if researchers are to make progress in rare cancers. He shared real examples from his research into a range of connective tissue cancers, including sarcoma. European collaboration through groups such as EORTC and Conticanet is helping to recruit patients for trials, as well as vital tissue samples.

Involving patient advocacy groups in the research is also opening up new channels through which clinicians can let patients know about trials that they may be eligible for. As one member of the audience pointed out, our present success in treating children’s cancers is based on this type of international collaborative effort.

This success has also been less about creating new drugs and more about finding better ways to use the existing ones. The main requirement is that researchers are open about sharing tissue samples, data and patients for the greater good.

Getting new treatments to patients
Peter Littlejohns from NICE outlined their process for appraising drugs – they currently use the same methods for both common and rare cancers – and this includes an assessment of the cost effectiveness as well as taking other social factors, on the advice of a citizen’s council, into consideration.

NICE are currently talking to academics and the Medical Research Council (MRC) about arrangements for drugs they haven’t recommended for regular use in the NHS, but which they would like to see used in research – but any bigger changes to the way that treatments for rarer cancers are assessed would have to be approved by the Department of Health.

Peter dealt with a flurry of questions about the process of drug approval and what is being done to speed this up. NICE are considering how they might start their approval process earlier, but they don’t want to compromise the quality of their evaluation or lose the essential element of wider consultation with the public.

Overall this session really demonstrated that the challenges of the rare cancers can be overcome if researchers are daring enough to try something new and different.

Julie Sharp, Science Information Manager at Cancer Research UK

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