A paper has now been published in the European Journal of Neurology, and a link to the abstract is available below.
Lead investigator
Dr Omar Abdel-Mannan
NIHR Academic Clinical Fellow
Population, Policy and Practice, Programme
UCL Great Ormond Street Institute of Child Health
30 Guildford Street
London WC1N 1EH
Email: ich.bpsu.sudep@ucl.ac.uk
皇家华人 the study
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 two to three 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 disabilities may be at an even higher risk of SUDEP, with one previous study showing a death rate almost 16 times greater than expected.
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.
You can download the protocol card, including references, below.
Case definition
Any child who dies aged between one 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 five years.
Publications
Published papers
- O Abdel鈥怣annan, AG Sutcliffe. . European Journal of Neurology. 2020 Feb;27(2):327-33.
Duration
October 2016-October 2017 (13 months of surveillance).
Funding
This study was funded by .
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).