SUDEP Action

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The Wearable Apnoea Detection Device

Support the Wearable Apnoea Detection Device


APPEAL UPDATE:

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:


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.

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. 

      

leaf"Thinking of you always Diane." - Michelle & Andrew Samuel

leaf"This is a great project and should help many sufferers of epilepsy." - John and Bernie McDonnell

leaf"Love you Victoria." - Liz and Lloyd Hannah

leaf"In memory of our lovely Becky." - Roger and Sandie Scrivens

leaf"Deep peace of the shining stars to you Mike." - Marrion Garrad

leaf"Remembering Robert with love from Mum and Grandma Molly." - Hilary Baldwin

leaf"It's good to know that our Laura is never forgotten." - Linda and Chris Price 

leaf" In loving memory of a wonderful husband and father, deeply missed with much love from Jean, Ben and Ryan Coyle-Larner."

leaf"For Benn Linnell, he would have been 41 on August 25th. Much love." - Maxine Linnell 

leaf"Christopher, my lovely son." - April Weaver

leaf"In memory of our beautiful daughter Nik...our angel, our inspiration. May our SUDEP angels save many. Love and miss you Nik." - Caron Robinson

leaf"A life too short, but one which continues to be an inspiration to all who loved Rachel." - Diana and Gerard Marchand 

leaf"In memory of our daughter, who died on 13/5/05, at the age of 32." - Annette Sheila Heath 

leaf"In loving memory of Ellie Davis (1991 - 2010)." - Linda and Bruce Davis

leaf"We do hope the wearable apnoea detection device is successful." - Mrs Heather Duffield 

leaf "James Christopher Wills, always in our minds and hearts." - Mrs Joan May Wills 

leaf"In memory of our dearly loved son." - David and Susan Freeman

leaf"Ash will always be wih us." - Anon.

leaf"Living in our thoughts and hearts always" - Vicky Stott

leaf"Our darling girl" - Timothy Philip Clark

leaf"In memory of our much loved and missed Daniel Dench" - Mrs Sally Dench

leaf"In memory of Tom Heward ( 23/3/90 - 26/8/07) a very special and much loved son and brother. Missed so much and always in our hearts. Xxxxxx" - Tania Heward

leaf"Life moves on but you are always in our hearts" - Mrs Lyn Rolt  

leaf "I love you and think of you every day." - Anon.

leaf"Lorna Helen Rose Pinder - The best daughter ever" - George and Caroline Pinder 

leaf "Jack foster. Never forgotten always in our hearts." - Jayne Sykes             

leaf"Steven Stewart. Loved and missed beyone words. Mum Dad and Lauren" 

leaf"A very dear son & brother died 19/09/1992 - suddenly - aged 16" - Susan Van Eijk

leaf"Our Merryn - a shining light, always remembered." - Lisa, Tristen and Cleo Allen

leaf"Michael Christopher Turner - A very special grandson who will never be forgotten and in remain in our hearts forever. Love always Nanna and Grandad" - Maureen and Tony Palin  

leaf"Michael Christopher Turner. Thinking of you on your 19th Birthday. You will always be in our hearts and minds forever. From Nanna, Grandad and all your family." - Maureen and Tony Palin