BPSU - Deaths in Children with Epilepsy (excl. Scotland)

Surveillance of deaths in children with epilepsy in children and young people is commenced in October 2016. The study team are hoping to determine the size of the problem of death in children affected by epilepsy, to compare the differences between sudden unexplained death in epilepsy (SUDEP) and other causes of epilepsy deaths, and to allow future studies in this field.

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Dr Abdel-Mannan

Lead investigator

Dr Omar Abdel-Mannan
NIHR Academic Clinical Fellow
Population, Policy and Practice, Programme,
UCL Institute of Child Health,
30 Guildford Street,
London WC1N 1EH

Overview

Epilepsy is the most common long-term disabling condition of the nervous system affecting around 600,000 people in the UK. People with epilepsy are 2 to 3 times more likely to die early than the general population. Children with epilepsy may die from a number of causes including sudden unexplained death in epilepsy (SUDEP). Different studies with different cohorts show that SUDEP is responsible for anything between 2%-18% of all deaths in patients with epilepsy.  The risk in children remains uncertain but is thought to be considerably less. Although the causes of SUDEP are undetermined, the most important risk factor in adults seems to be the frequency of seizures. Young people with severe epilepsy and learning disability may be at an even higher risk of SUDEP, with one previous study showing a death rate almost 16 times greater than expected. 

A prospective pilot study is much needed, to determine the size of the problem of death in children affected by epilepsy, to compare the differences between SUDEP and other causes of epilepsy deaths, and to allow future studies in this field. Using the BPSU national surveillance system we aim to investigate the incidence of deaths in children with epilepsy in the UK and Ireland, and describe the demographic characteristics of affected children. The study will contribute to our understanding of the epidemiology of mortality in epilepsy in children in the UK and Ireland, and help us to evaluate the effectiveness of current public health measures.*

*For references see protocol card

Case definition

Please report any child who dies aged between 1 month and 16 years of age who also has the simultaneous diagnosis of epilepsy.

The child must have had seizures or been treated with antiepileptic medication within the last 5 years.

Please report all suspected cases,even if the results of investigations are pending. Please report to the BPSU even if you believe the case may have been reported from elsewhere.

Duration

October 2016 to October 2017 (13 months of surveillance).

Funding

This study is being funded by SUDEP Action.

Ethical approval

This study has been approved by London Central REC (REC reference: 16/LO/1265) and has been granted Section 251 HRA-CAG permission (CAG Reference: 16/CAG/0093).

Support groups

Further information

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