Deaths in Children with Epilepsy
Research type
Research Study
Full title
British Paediatric Surveillance Unit (BPSU) study of deaths in children with epilepsy aged under 16 years in the UK and the Republic of Ireland.
IRAS ID
200322
Contact name
Omar Abdel-Mannan
Contact email
Sponsor organisation
UCL - Institute of Child Health
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Epilepsy is a common condition, affecting more than 500,000 people in the UK. This means that almost one in every 100 people has the condition. It mainly affects the brain and causes repeated 'fits' or seizures. Epilepsy can start at any age, but it most often begins during childhood. For most people with epilepsy, treatment with medications called anti-epileptic drugs (AEDs) is recommended. These medications cannot cure epilepsy, but they are often very effective in controlling seizures. A common perception of parents first witnessing a seizure is that their child almost died, and a common fear is that their child might die if another seizure occurs. It is very rare for a child to die from a seizure. However, studies have shown that people with epilepsy, including children and young people, have a higher risk of death than people without epilepsy.
Death in a child with epilepsy may be due to a number of causes, including sudden unexplained death in epilepsy (SUDEP). SUDEP is defined as death for no obvious reason in a person with epilepsy, and it is hard to predict. There is very little information regarding the extent of the problem especially in children and young people. Our study will provide important information regarding the number of deaths in children (aged 0-16 years) with epilepsy in the UK. We will also compare the differences between SUDEP and other causes of epilepsy deaths. We believe our research will benefit children with epilepsy, their families and the clinicians who manage them. We hope that raising awareness of the increased risk of early death associated with epilepsy will help in improving medication compliance and engagement with clinical services.
REC name
London - Central Research Ethics Committee
REC reference
16/LO/1265
Date of REC Opinion
6 Sep 2016
REC opinion
Further Information Favourable Opinion