Report warns young people missing out on cancer clinical trials

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A new report published by the Teenage Cancer Trust warns that too many young people aged 13–24 are missing out on the chance to take part in clinical trials, leaving them unable to access innovative new treatments that could increase their chances of survival.

The report, which was developed after a year of consultation with young people the charity supports plus clinicians, academics, charities, and other experts, identifies the main barriers to participation and makes recommendations on how policymakers, the NHS, pharmaceutical industry, and researchers can help overcome these. 

In the report, key stakeholders identified a lack of available trials as the key barrier. A lack of open trials impacts patients of all ages, but young people are uniquely disadvantaged because they are more likely to experience rare cancers or find themselves too old to take part in paediatric trials and too young for adult trials.

Other barriers identified include a lack of reliable easily searchable information about current trials for clinicians, and a lack of age-appropriate information for young people to aid their decision making. The report also highlights the need for trial participants to often travel long distances to take part, and the associated expense.  

The Teenage Cancer Trust says the unique needs of young people are consistently overlooked in national efforts to increase access to trials – for example  last year’s O’Shaughnessy Review on commercial clinical trials – and is calling for their views and experiences to be addressed as recommendations are developed and put into action.   

To effectively measure reductions in inequality, the Teenage Cancer Trust is calling for data around the numbers of young people who are offered and participate in trials – and those for whom no trial is available – be consistently collected and transparently available.

Thomas Brayford, our Policy and Public Affairs Manager, said: “Access to clinical trials is a huge issue for the brain tumour community and we welcome this report from the Teenage Cancer Trust which highlights the barriers facing young people.

“Currently, only 5% of brain tumour patients enter the limited number of trials available, so any route to improvement must be listened to. In our new manifesto, we are calling on the Government to commit to increased participation of adult and paediatric brain tumour patients in clinical trials because equity of access is crucial if we are to find better treatments and, ultimately, a cure.”

Read the Teenage Cancer Trust’s report online:

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