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The BIOMEDE Trial into DIPG / DMG

The BIOMEDE Trial into DIPG / DMG

Diffuse intrinsic  pontine glioma’s, now newly named Diffuse Midline Glioma is the major cause of brain cancer death in children aged 4-10. As the tumour cells grow intertwined with the healthy brain cells, surgery to remove the tumour is not a viable option.  The tumour is often in the brainstem, the critical part of the brain that is responsible for breathing and heart beat.

Some chemotherapy drugs are under investigation but none have yet been approved.

Radiation is sometimes used to shrink the tumour, but is not curative as the tumour grows again.

Progress with DMG/DIPG research to date:

Professor Darren Hargrave Clinical Professor of Paediatric Neuro-Oncology, Developmental Biology and Cancer Department. UCL Great Ormond Street Institute of Child Health, London


SUMMARY: In the past it was considered too greater risk to take a biopsy from a child suffering from DIPG/DMG. The BIOMEDE trial aims to find more effective treatment methods based on the molecular structure of the tumour.  Professor Darren Hargrave’s team is now able to test DIPG/DMG treatment therapies resulting in a greater understanding of the molecular changes of DIPG/DMG.  For the most understudied of all child brain cancers this is a significant development.

RESULTS: the results indicate that personalising treatment, based on an improved understanding of the individual child’s brain tumour can improve life expectations. Due to excessively complicated administrative procedures and regulations clinical trials often take years to complete, however BIOMEDE is designed to be far more time effective and  researchers are able make the addition of a new drug and/or remove ineffective drugs without the need to restart the trial.

Professor Susan Short, Professor of Clinical Oncology, University of Leeds

PROJECT : Reovirus (cancer killing virus) to fight high grade gliomas

SUMMARY Until recently it was thought that chemotherapy drugs were unable to cross from the blood to the brain because of  the blood-brain barrier. However Professor Short’s research showed that reovirus can cross the membrane meaning that it can be given by injection into a blood vessel, carried through the blood-brain barrier to the brain tumour. This is both lower risk and less aggressive and can be used alongside radiotherapy and chemotherapy.

RESULTS: the results indicate that  a virus injected into the blood stream could boost the immune system to treat aggressive brain tumours. By delivering drugs direct to the brain the aim is to prolong the lives of children.

Obtaining biopsies from children will effect a significant shift in brain tumour research and put researchers in a stronger position to comprehend molecular changes in DIPG/DMG tumours. Professor Short’s team also researched hematopoietic stem cells (multi-potent primitive cells that can develop into all types of blood cells) to deliver drugs directly to cancer cells and also proved they can pass through the blood brain barrier to directly target the tumour.

Professor Susan Short said:

“The presence of cancer in the brain dampens the body’s own immune system. The presence of the reovirus counteracts this and stimulates the defence system into action.

“Our hope is that the additional effect of the virus on enhancing the body’s immune response to the tumour will increase the amount of tumour cells that are killed by the standard treatment, radiotherapy and chemotherapy.

“Brain cancer is a devastating disease. For a long time, there have not been many new developments that we could offer patients but the research that is happening at the University Leeds and elsewhere is beginning to offer a new approach.”

Professor Chris Jones heads the Glioma Team at the Institute of Cancer Research, London. Chris is a Fellow of the Royal College of Pathologists, and is Biology Lead for the International Society for Paediatric Oncology European High Grade Glioma Working Group. His research aims to find the genes which drive the development of childhood brain tumours.

SUMMARY: Tumour-targeted drugs for children diagnosed with DIPG/DMG.

RESULTS: The research revealed some significant genetic differences between the adult and child form of the disease, and has highlighted potential new drug targets.

The team focuses on paediatric high grade and diffuse intrinsic pontine glioma (now reclassified as diffuse midline glioma) – tumours that continue to have a poor prognosis. They are part of a major effort to build up the most detailed picture to date of the entire set of DNA instructions found in a cell of these aggressive cancers.

As these tumours are rare, Professor Jones is collaborating with international organisation “CONNECT”, a collaborative network of paediatric cancer centres with the objective to improve outcomes for children with high-risk brain tumours.  Via the collaboration Professor Jones and his team will be able to collect samples that cover the spectrum of potential variations, and to conduct the most comprehensive possible analysis.

Professor Jones said “There is a real unmet clinical and basic science need in this tumour type, as paediatric high grade gliomas are incredibly resistant to current treatment options, and we really know very little about the underlying biology of the disease,”

“Our ambitions within the laboratory are to turn some of our laboratory-based hypotheses into real, molecularly-based treatments for malignant paediatric gliomas, and to see, at last, real progress being made in the survival of children with these dreadful cancers.


Research is needed into DMG diffuse midline gliomas aka DIPG, including investigation into causes. This could help develop new treatments for future generations.

Due to insufficient research the causes of rare childhood brain tumours, including DMG/DIPG are unknown and chemotherapy drugs used to treat other high grade tumours in other parts of the brain have not been effective in treating children with DMG/DIPG. This is one of the most difficult things for a parent to accept, that for their child there is no hope. Families are left feeling helpless.

Life changing discovery depends on exceptional clinical research. We need help to raise awareness and funds to support this.

Please help us to make progress with research into rare childhood brain tumours.


Fighting to make all brain tumours curable

Zach's Story

Zach was diagnosed with a rare brain tumour called Diffuse Intrinsic Pontine Glioma (DIPG) when he was just three years old. Joss Searchlight visited the family shortly after diagnosis.

Zach’s mum, said: “Zach didn’t speak very well as a toddler and when his right eye developed a squint he was given glasses and an eye patch to strengthen the eye” However Zach’s symptoms progressed and his parents were eventually given the worst news, that Zach had an inoperable brain tumour.

With no cancer treatment options available his parents agreed to Zach being part of a ‘clinical trial’. The aggressive drugs affected Zach’s immune system and his parents were distraught to be  told Zach was unlikely to survive more than 24 hours. Zach did survive, however his speech and memory were affected.

Zach was happy until his cancer progressed and no treatments were offered. Zach tragically died age 6

Joss Searchlight arranged for Zach to meet his hero ‘Diago’ at Nickelodeon World (A children’s interactive educational series on children’s TV). It was following this family holiday that his mum contacted our charity and said “Zach stopped speaking when we went to Blackpool completely and it hasn’t returned. As you can imagine he becomes really frustrated as he can’t communicate to us.  Obviously we feared the worst with the tumour but thankfully he has had two MRI over this period and the tumour remains stable”. Although the tumour was stable, doctors at Harley Street feared the swelling in Zach’s brain to be treatment related.

After much persistence with doctors and education authorities Zach was offered a place at a school for children with moderate learning difficulties and the wonderful opportunity to join their signing program. Zach was happy until his cancer progressed and no treatments were offered. Zach tragically died age 6.

Zach’s mum said: “A high percentage of children don’t survivor DIPG for more than a year. Zach has proven there are exceptions and his dad and I are very proud of the way he has coped with everything he has had to face.”

His mum would like to see more awareness and research into DIPG


Proton Therapy in the U.K

Proton Therapy is an advanced form of radiotherapy that uses a precision high-energy beam of particles to destroy cancer cells.

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