Medical research institutions have raised concerns over the status of EU regulation around drug development and clinical trials for childhood cancers within UK law once we leave the European Union.
As a charity, we are clear that EU regulation in this area is imperfect. The Paediatric Medicines Regulation, which aimed to address the lack of drug development for childhood cancers, needs revision to ensure that more medicines are researched and developed specifically for the paediatric patient population.
The current system for evaluating paediatric medicines is slow and ineffective at delivering approved drugs for the paediatric population.
We believe stricter regulation, coupled with greater incentives for companies to fully test molecularly targeted drugs where appropriate, are required to kick start provision of innovative medicines for this poorly served population.
In the European Parliament, we urge MEPs to publicly support a revision of the text of the legislation and to lobby on behalf of all young people in the UK newly diagnosed or living with a brain tumour.
However, as Britain leaves the European Union, it is crucial there is alignment between UK and EU legislation in this area. With such a small cohort of patients, it can be impossible to recruit sufficient numbers to a clinical trials in one country, so collaboration at a European level is crucial.
For a disease group such as ours, a pan-European approach to clinical trials is paramount because being a relatively rare disease, our research struggles to recruit sufficient numbers of patients to ensure that the trials are effective.
Over the coming months, we will be lobbying MPs in Westminster to highlight the importance of an aligned and compatible regulatory framework between the UK and the EU after Brexit on areas of regulation affecting childhood brain tumours like the Paediatric Medicines Regulation.
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