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Quality of survival in a Europe-wide clinical trial

Fast facts

  • Official title: Quality of Life and Quality of Survival in paediatric medulloblastoma: A prospective study on children recruited to the SIOP-PNET5-MB trial
  • Lead researcher: Professor Colin Kennedy
  • Where: Southampton General Hospital and The University of Southampton 
  • When: July 2017 – December 2023
  • Cost: £308,057 over a five-year period
  • Research type: Paediatric, Medulloblastoma (High Grade), Clinical Trial

Professor Kennedy is a Professor in Neurology and Paediatrics, Consultant and Clinical Lead in Paediatric Neurology. He has over 20 years’ experience in general paediatric neurology, with a special interest in neuro-oncology.

He is a member of the UK Children’s Cancer and Leukaemia CNS subgroup and European (SIOPe) Brain Tumour committees.

This funding supports the quality of survival aspects of the European clinical trial entitled SIOP-PNET5-MB. This trial is for children with medulloblastoma tumours that have been defined in the clinic as “standard risk”. The purpose of the trial is to assess whether treatment can be reduced so that these children experience less long term side effects, but still benefit from the anti-tumour activity of the protocol.

A key part if this trial is to make sure that the decreased treatment has a real benefit to children in terms of their long term quality of life. Professor Kennedy and his team have spent many years developing ways to measure quality of life aspects from the perspective of the child, as well as their parents. This work is now being put in place as a formal part of the PNET5 trial.

The team will be helping clinicians across Europe to administer special questionnaires so they can assess things like memory, mobility and behaviour as well as how the child, and their parents perceive their ongoing health and wellbeing. This is a real step towards halving the harm of children going through treatment.

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Research is the only way we will discover kinder, more effective treatments and, ultimately, stamp out brain tumours – for good! However, brain tumours are complex and research in to them takes a great deal of time and money.

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