Scotland’s youth missing out on trials of cancer treatment

The National Cancer Research Institute (NCRI)

Children and young adults with cancer in Scotland have fewer clinical trials available to them compared with the UK as a whole, according to research presented at the National Cancer Research Institute (NCRI) Cancer Conference in Liverpool.

"Participating in research is a "win-win": it brings direct benefits by ensuring you get access to modern treatment and intensive support; but it is also the best way to contribute to improving treatment for patients in the future." - Professor Matt Seymour

Clinical trials need to be tailored to the needs of young people because there are differences in the biology of their cancers compared with adults. There’s an urgent need for different, kinder treatments with fewer side effects.

Researchers in Edinburgh looked at clinical trials data from the UK Clinical Research Network Cancer Trials Portfolio.

They found 534 trials for experimental new cancer treatments in the UK are suitable for 16-24* year olds. But, of these, only 152 are available in Scotland.

Young adults with cancer are offered treatment across multiple hospitals in Scotland so that they can be treated near to their homes. But problems can arise when each hospital takes a small number of young adults. These hospitals might not be used to recruiting young patients to clinical trials.

Making this problem worse is the lack of information about clinical trials that are available to young people. This makes it more difficult for hospitals to refer their young patients to suitable trials.

Dr Angela Edgar, one of the authors of the study and Chair of the NCRI Teenage and Young Adults Clinical Studies Group, said: “Our study confirms that children and young adults in Scotland have fewer clinical trials available to them compared to the rest of the UK. The reasons are likely to be complex, but we need to close this ‘trial gap’.

“The most disadvantaged are 16-24 year olds. There are fewer trials for them to begin with, and unlike younger children, they are often treated at centres where trial recruitment in this age group may be unfamiliar and overlooked.”

The Scottish government recommends that all children and young adults should be able to go on clinical trials because there are benefits in survival and patient experience.

Professor Matt Seymour, NCRI clinical research director, said: “Compared with most countries, cancer patients in the UK are much more likely to be offered the chance to take part in clinical research as part of their treatment. Participating in research is a "win-win": it brings direct benefits by ensuring you get access to modern treatment and intensive support; but it is also the best way to contribute to improving treatment for patients in the future. So it is hugely important to highlight groups where we could do better, and Dr Edgar's study throws down a challenge to increase the access to research for young people in Scotland."

ENDS

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Notes to Editor

* For children under 16 years of age, 19 of the available 39 cancer trials were open in Scotland