Professor Neil Sebire, Professor of Paediatric Pathology, Great Ormond Street Children’s Hospital

Dr Victoria Bryant, Clinical Research Associate, UCL Great Ormond Street Institute of Child Health

Project summary

It is well known that around 1 in 1000 otherwise healthy babies may die suddenly and unexpectedly in their sleep with no definite cause found even after thorough standard investigation, this phenomenon being known as sudden infant death syndrome (SIDS) or ‘cot-death’. This is the commonest group of deaths in childhood of children without known underlying medical problems, and much research has been carried out to try and find the cause of cot-death.

However, whilst much less common, it is not widely appreciated that children aged more than one year may also suffer from a similar condition, termed sudden unexpected death in childhood or SUDC. In contrast to SIDS there is hardly any research investigating SUDC.

The aim of this research study is to investigate SUDC cases from a single specialist centre to find out what are the characteristics of these cases, whether they differ from SIDS cases in terms of what is found on investigations, and to start to address specific questions that have been suggested about whether certain brain abnormalities or infections may be a cause of SUDC, using a range of special research laboratory techniques, such as measuring levels of different proteins and comparing them between cases.

The work will be carried out at Great Ormond Street Hospital (GOSH), one of the leading children’s hospitals in the world, by a specialist team of pathologists. GOSH has developed a unique database containing non-identifiable details of >3,500 paediatric post-mortem examinations, allowing investigation of SUDC cases, compared to other groups of infant and child death.

The team will be led by Professor Neil Sebire, an international expert in the area of infant death research who has been recognised by NIHR as one of the UK’s leading medical academics. The findings will raise awareness of SUDC, and provide new knowledge regarding what may cause these otherwise apparently well children to die suddenly and unexpectedly, in order that future cases may be prevented.