Brain Tumour Research was among attendees at a meeting with Seema Kennedy MP, Parliamentary Under-Secretary for Health, and Derek Thomas MP, Chair of the All-Party Parliamentary Group on Brain Tumours.
Also present were representatives of SUCCESS charity and Northwest Biotherapeutics. The meeting took place to discuss preparing children cured of a brain tumour for life ahead, the need for the UK to streamline the number and length of clinical trials, and national investment for research into brain tumours.
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Dr Helen Spoudeas, a paediatric endocrinologist and founder of SUCCESS charity, talked about the need for enhanced recognition of brain tumours as a chronic brain injury, particularly among children and young people, and that children cured of a brain tumour may also experience multiorgan injury from the additional cancer therapies they receive, and may require long-term, specialist medical support as a result. She also discussed the need for provision of neuroendocrine and educational rehabilitation upon diagnosis and continuously throughout after cure through to adulthood, while the brain is young and ‘plastic’.
Dr Navid Malik of Northwest Biotherapeutics spoke of the need for Parliament to work with the Medicines and Healthcare products Regulatory Agency (MHRA) to modernise the clinical trial process, streamlining and reducing the number and length of trials required for at least an initial (“conditional”) approval for products with an established safety profile. This accelerated pathway would enable regenerative medicines that demonstrate safety and predict efficacy in small early-stage clinical trials to reach patients sooner.
Ms Kennedy, who was joined by members of her team, agreed to look into the issues discussed and report back. We will update you on progress in due course.
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*Pictured from left to right:
Dr Helen Spoudeas, Founder of SUCCESS Charity and Consultant Paediatric Endocrinologist; Neuroendocrine Oncology Lead at Great Ormond Street Hospital,
Derek Thomas MP, Chair, All-Party Parliamentary Group on Brain Tumours
Sue Farrington Smith, Chief Executive, Brain Tumour Research
Erik Ramos, Special Projects, NorthWest Biotherapeutics
Dr Navid Malik, Non-executive board director, NorthWest Biotherapeutics
Richard Crowther, Trustee of SUCCESS charity, Brain Tumour Research Activist, and parent to a child diagnosed with brain tumour