Developing an Apnoea Detection Device to help prevent Sudden Unexpected Death in Epilepsy.
Background
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?
Stage one
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.
Stage two
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.
Timescales
We envisage stage one testing taking place from June 2015 at the rate of approximately one patient a
week for one year.
Research Team
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
What will it cost?
The cost of Stage one of testing for the monitor is £165,000
This is made up of the following:
Staff Costs
One full-time clinical
research fellow
(neurologist in training)
for the clinical tasks
One full-time postdoctoral researcher for
the engineering tasks
Part-time project
Manager based at
Imperial College
Cost yr 1 £
35000
Cost yr 2 £
17500
Overall Cost £
52,500
35000
17500
52,500
22500
11,000
33,500
Consumables for
prototyping
5000
Data collection, analysis
and statistical support
from Imperial College
Contribution to SUDEP
Action for public &
patient involvement
Meeting & dissemination
costs
Total
3,500
1,500
5,000
10,000
5,000
15,000
500
1,000
1,500
111,500
53,500
165,000
SUDEP Action June 2014
5,000