Diffuse intrinsic pontine glioma (DIPG) is a type of brain tumour that forms in a part of the brainstem known as the pons. DIPG affects between 20 to 30 children in the UK every year and there is no effective treatment.
DIPG tumours are incredibly difficult to treat as they can't be be operated on due to their location within the brainstem, a crucial part of the brain that controls vital functions such as breathing. Our researchers are determined to understand more about this condition and develop new and effective methods to treat it. You can learn more about DIPG on our information pages.
Our INSTINCT programme brings together experts from Newcastle University, the Institute of Cancer Research (ICR) and the UCL Institute for Child Health in London to research high-risk childhood brain tumours, including DIPG.
The DIPG programme of work is being led by Dr Chris Jones at the Institute of Cancer Research. Dr Jones has extensive experience in understanding the genetic basis of these tumours and what is driving tumour growth and then developing new drugs that target the genes involved. In recognition of Dr Jones' expertise in this field, he is Chair of the European Society of Paediatric Oncology's group on DIPG and high-grade paediatric brain tumours. As part of the collaborative aims of INSTICNT Dr Jones, with the support of The Brain Tumour Charity, is hosting a closed meeting for some of the world leading experts in DIPG. The aims of the meeting are to combine knowledge and scientific findings from around the world to make faster breakthroughs in DIPG research.
Dr Darren Hargrave, a paediatric neuro-oncologist at Great Ormond Street Hospital, is leading a new clinical trial testing three new drugs in 150 children affected by DIPG. This trial will investigate whether each of these new drugs are effective when combined with radiotherapy, whether they can treat the tumour and whether they are well tolerated by patients. The study will be carried out over five years and is being funded in partnership with Cancer Research UK.
Dr Chris Jones and his team at the ICR have previously found a common genetic fault in the DNA of some children with DIPG and the DNA of people with fibrodysplasia ossificans progressive (FOP). Sometimes called Stone Man Syndrome, FOP causes damaged muscle to turn to bone, so that patients experience increasing immobility and pain as they are gradually 'locked in' to a growing skeleton. Scientists have already discovered that FOP is caused by a fault in the gene ACVR1, which is also found in some DIPG patients. Some of the drugs being developed to treat FOP have also shown to be effective in killling DIPG cells containing the ACVR1 fault.