A teenager who is the world’s first patient to take part in a clinical trial to use deep brain stimulation (DBS) to treat epilepsy has seen his daytime seizures reduce by 80%.
Oran, who had been having severe epileptic seizures for eight years and often needed resuscitation, was the first child in the UK to have this device implanted at Great Ormond Street Hospital in October 2023, aged 12.
Eight months on, his seizures have dramatically reduced in frequency and severity thanks to the device.
The rechargeable device is mounted onto the skull and is attached to electrodes deep in the brain to reduce seizure activity.
This is the first UK clinical trial measuring this type of treatment for children with epilepsy. The CADET pilot (Children’s Adaptive Deep brain stimulation for Epilepsy Trial) will now recruit three additional patients with Lennox-Gastaut syndrome, which is funded by the Royal Academy of Engineering before 22 patients take part in the trial, which is being supported by GOSH Charity and LifeArc.
The study is sponsored by UCL.
Martin Tisdall, Honorary Associate Professor at UCL and Consultant Paediatric Neurosurgeon at GOSH, said: ‘Every single day we see the life-threatening and life-limiting impacts of uncontrollable epilepsy. It can make school, hobbies, or even watching a favourite TV show utterly impossible. For Oran and his family, epilepsy completely changed their lives, and so to see him riding a horse and getting his independence back is astounding. We couldn’t be happier to be part of their journey.
‘Deep brain stimulation brings us closer than ever before to stopping epileptic seizures for patients who have very limited effective treatment options. We are excited to build the evidence base to demonstrate the ability of deep brain stimulation to treat paediatric epilepsy and hope in years to come it will be a standard treatment we can offer.’
Deep brain stimulation (DBS) is a treatment that involves surgery to insert a small device into the brain to stimulate specific parts.
Unlike other DBS devices, which are mounted on the chest with wires running up the neck to the brain, this device is mounted on the skull, meaning the leads are less likely to break or erode as the child grows.
The device is also rechargeable through wearable headphones, which can be used while watching a video or interacting with a tablet. Therefore, replacing it every three to five years does not require surgery.
Lead engineer, Professor Tim Denison (University of Oxford and Royal Academy of
Engineering Chair in Emerging Technologies), said: ‘Our mission is to design pioneering research systems for exploring the treatment of intractable health conditions such as paediatric epilepsy. Oran is the first child in the world to receive this device, and we are extremely pleased that it has had such a positive benefit for him and his family.’
The device targets the thalamus, a hub for electrical signals in the brain. Hopefully, the device will block electrical pathways and stop seizures from spreading.
It also has settings for optimising seizure patterns that, although not utilised in this trial, could be used in the future for patients with LGS.
The CADET Pilot is a collaboration between UCL, GOSH, King’s College London, the University of Oxford, and Amber Therapeutics, a UK-based company.
The second phase of the trial will be jointly funded through GOSH Charity and LifeArc’s Translational Research Accelerator Grants.
