DIPG is rare and understudied. Thus, it is hard to provide hard statistical information on the number of children effected.
Scientists believe that 1,000 or more DIPG cases are diagnosed across the developed world each year.
DIPG primarily affects children between the ages of five and nine years old. However, children and young people of all ages have been diagnosed with DIPG.
Treatments for DIPG
There is currently no effective prevention or cure for DIPG. Due to their location in the brain stem, DIPG tumours cannot be surgically removed. Treatment options include:
Radiation therapy – Although the DIPG Registry reports that up to 85% of children with DIPG show improvement in symptoms after radiation therapy, the cancer almost always grows back after a few months.
Experimental chemotherapy – Various forms of experimental chemotherapy are being investigated as potential treatments for the condition. Multiple clinical trials have demonstrated that routine chemotherapy does not increase survival rates in Diffuse Intrinsic Pontine Glioma.
Convection Enhanced Delivery (CED) – Delivering chemotherapy and other drugs beyond the blood brain barrier. Funding Neuro are helping to promote the work of neuroscientist Professor Steven Gill in Bristol, England.
To treat this most aggressive form of brain tumour in children the team led by Professor Gill have had to carry out extensive testing and design modifications of a new drug delivery system as well as develop and test new formulations of drugs for their safety and effectiveness when infused directly into the brainstem. During the several years that they have been carrying out these tests and preparing for a clinical trial they have been fortunate in being able to offer CED to a small number of children with DIPG on compassionate grounds with the approval of the MHRA. Thanks to the bravery and commitment of the families and of course the children themselves, who have undergone this experimental treatment we have learned a considerable amount about how to deliver drugs safely into these tumours and we are seeing some encouraging results. This information has been presented at international meetings and has been critically important in informing our trial design and giving us confidence that we will give the trial it’s best chance of success.
Funding Neuro will run a clinical trial to prove these results in 2019 in London.
Please contact us at Funding Neuro with any further questions or concerns. We do not offer support or bereavement counselling, however our staff can offer guidance on best options or put you in touch with other organisations who can help.