New epilepsy treatment trials at specialist University centre

Trials of a new cannabis-based treatment for children with epilepsy are taking place at Edinburgh University’s Muir Maxwell Centre. Randomised controlled trials of the treatment – called Epidiolex – are being held at the centre, based at the Royal Hospital for Sick Children, along with Great Ormond Street Hospital in London. The treatment is based on one of the non-psychoactive components of cannabis called CBD, meaning that it does not result in the high usually associated with the drug. These are the first authorised trials of the treatment in the UK, although earlier studies in the US have shown a reduction in both frequency and severity of seizures in epilepsy cases and especially for young sufferers.

The treatment will be offered first to children suffering from Dravet’s Syndrome, a dangerous and rare form of epilepsy which takes hold in the first year of life. It is also regarded as very difficult to treat. It often causes extended seizures of more than five minutes, which can prove fatal to the patient.

Dr Richard Chin, head of the Muir Maxwell Epilepsy Centre and Senior Lecturer in Paediatric Neurosciences at the University of Edinburgh is the lead academic of the trial. In comments to the Student, he said that “many children with serious forms of epilepsy do not respond to the medications that we currently have available.” He added that of the estimated 70,000 children affected by epilepsy in the UK, Dr Chin says that “3 in 10 have refractory epilepsy, so parents and doctors are always on the search for new treatments.”

“We are aiming to start another trial recruiting patients with Lennox Gastaut Syndrome in the spring or summer once the governance approvals are obtained.”

When asked as to whether Epidiolex was to be used in conjunction with or as a replacement for other treatments, Dr Chin asserted that some patients have managed to come off all other medications. However, Dr Chin also cautioned that “although preliminary and basic science data are encouraging, the long term effects on the developing brain are not yet known.” The trial’s organisers have stressed that the treatment will be restricted to those children whose current seizures cannot be controlled by existing medication.

Dr Chin says that “the results of the trials if positive should allow licensing of the drug within 2 years for the specific types of epilepsy tested in the trials.” The founder of the Muir Maxwell Trust, Ann Maxwell, said: “I welcome the launch of these trials as it marks an important milestone in our long journey towards understanding the condition and improving the treatment of those suffering this severe form of epilepsy. “As the mother of a teenager with this life altering condition, I strongly support the exploration of ground breaking medications that could seek out new ways to improve patients’ life quality.”

The trials are being sponsored and funded by the British biotechnology company GW Pharmaceuticals, which has developed the Epidiolex treatment. Dr Chin says that he is happy to hear from people who wish to work with or volunteer to help with the activities of the Muir Maxwell Epilepsy Centre through their newly launched website (www.muirmaxwellcentre.com)

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