Thanks to your fantastic, generous support, we're delighted to say that the clinical trial for the WADD has now started! You can find out more about the trial here, and general information about the project & its appeal are below:
There are about 600,000 people with epilepsy in the UK. Around a third of these have seizures despite medication. These people are at high risk of premature death. Sudden Unexpected Death in Epilepsy (SUDEP) kills around 600 people each year in the UK. Young adults are at particular risk. They are often alone at the time of death.
What causes SUDEP?
The exact causes of SUDEP deaths are not always known. However, apnoea (breathing stopping) is the most likely cause. In some cases the heart stops first. Either way, if there were a monitor to give the alarm when someone stopped breathing, then there may be a chance of saving that life through CPR.
What will this project aim to achieve?
Imagine a world where no parent has to go through the dreadful experience of losing their son or daughter to SUDEP. The goal of this project is to help make that vision a reality.
This project will test a tiny wearable device to monitor breathing in those with epilepsy. If breathing stops, an alarm is triggered. There is currently no such device in production. All the existing systems are bulky and have very high false alarm rates. The ultimate aim is to produce a minute device which could be worn all the time by people at high risk of SUDEP. Maybe one day, it could even be implanted in children with epilepsy to keep them safe for life.
How far have the research team got?
Professor John Duncan and Dr. Esther Rodriguez-Villegas have developed a small wearable apnoea detection device. This has been tested on 10 sleep apnoea patients and 20 controls. This confirmed high sensitivity and low false alarm rates.
What needs to happen next?
The device needs testing on 50 people with epilepsy to test how accurate and reliable it is on people having seizures. The patients will be recruited via the National Hospital for Neurology and Neurosurgery EEG unit where they are already undergoing tests and observation for their epilepsy.
The device may need recalibrating following the first phase of testing. The researchers would then need to test the device on wider pool of patients. Alternatively, it may be that the research findings are emphatic enough at this stage to seek commercial partners or venture capital funding. Naturally, we cannot predict what the research will show at this stage, but hope that this project will be a significant step forward in the fight against SUDEP.
Professor John Duncan is an academic clinical neurologist specialising in epilepsy at the UCL Institute of Neurology and the clinical director of the National Hospital for Neurology & Neurosurgery.
Dr. Esther Rodrigues-Villegas is an electronics engineer with a specialism in wearable sensors based at Imperial College.