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PNET5 was a trial we helped to fund that was adapted by the NHS for clinical trials. It aims to prove that children who are diagnosed with a lower risk medulloblastoma would benefit from less aggressive treatment regimens, and that those with standard risk medulloblastoma could benefit from a different treatment regimen resulting in fewer side effects, without any negative impact on length of survival.

Kinder, less aggressive treatments will drastically improve quality of life for these children; reducing the time spent unwell from treatment, reducing time in hospital and, critically, reducing the risk of long-term disabilities.

Children diagnosed with a medulloblastoma in the UK will receive biomarker testing as routine for the first time to determine the risk of the medulloblastoma.

Research and clinical trials are expensive. We allocated £75,000 over three years to help fund the biomarker testing element of the PNET5 clinical trial. The biomarker testing in PNET5 alone costs £2,000 per child. That’s why, whether you can spare £2, £20 or £200, every pound is important to us – it all adds up.

To give you an idea of how your donation to the PNET5 clinical trial could have been spent, here’s a breakdown of some of the costs for biomarker testing – a series of tests that allow scientists to accurately diagnosis the type of medulloblastoma each child has:

£10 will pay for an antibody test (to identify how the immune system is responding)
£60 will pay for a genetic test to assess the MYC gene (a gene that plays a role in cell growth, division and change)
£350 will pay for a DNA methylation array (a test) to assess the molecular subgroup of a tumour
£500 will pay for the mutation status of critical medulloblastoma genes to be assessed
£2,000 will pay for a full molecular diagnostic analysis on a single medulloblastoma tumour

Marie Hughes, CEO and founder OSCAR’s PBTC: I am so proud that we are able to part-fund the biomarker testing in the UK part of this European trial. Working with The Brain Tumour Charity gives me confidence that our funds are being put to optimum use. After watching Oscar go through devastating treatment for medulloblastoma and then losing him, it is imperative for me to fund this kind of research, and an honour to be part of changing how other children will go through treatments in the future. Oscar would be so proud of all the work being done in his name.”

We donated  £125,000 over 5 years towards improving understanding and treatment of the type of childhood brain tumour which took Oscar’s life.

OSCARs PBTC part-funded a researcher based at the world-renowned Institute of Cancer Research, who carried out work, as part of an international and interdisciplinary team, led by Professor Louis Chesler.

Medulloblastoma is the most common malignant brain tumour in children and causes 10% of cancer deaths. Large studies of tumour-tissue have identified four subgroups of medulloblastoma in patients, but only children with the two least aggressive subgroups have new treatment options. For those children with aggressive, “Group 3″ tumours, survival is dismal and treatment is devastating.

Professor Chesler was working with a team from Germany and the USA to study Group 3 medulloblastoma. The team looked to analyse the genome in medulloblastoma tumour cells while also working on new ways to test drugs for this tumour type.

If successful, the research could, for the first time, reveal how these tumours are wired. This could mean that new drugs to treat this tumour type are delivered to the clinic within five years.