Epidemiology of Biliary Atresia (1999-2020)
Research type
Research Database
IRAS ID
288273
Contact name
Mark Davenport
Contact email
Research summary
Biliary Atresia (England and Wales)
REC name
South West - Central Bristol Research Ethics Committee
REC reference
22/SW/0131
Date of REC Opinion
25 Apr 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This is a database of all infants in England and Wales with a diagnosis of biliary atresia (ICD 10 Q44.2) and has been built from all those infants who have been referred to one of the three national paediatric hepatobiliary centres (Kings College Hospital, London; Birmingham Women's and Children's Hospital; Leeds Children's Hospital). Data are collected locally and transferred as a database without specific patient identifiers (e.g. name, address) within KCH. This is then maintained annually from updates received from the other hospitals. The database began in 1999 with the establishment of formal centralisation of the management of this disease in England and Wales - a policy which continues today. Initial surgical treatment (typically the Kasai operation) and any subsequent need for liver transplantation is recorded.
Research programme
The database has been used to report national outcomes of biliary atresia from England and Wales in two published papers (Lancet 2004 and Journal of Pediatric Surgery 2011). In addition an epidemiological study looking at potential causes of the disease was published in the Archives of Disease in Childhood. The aim of the current study is to try and identify predisposing factors such as ethnicity, deprivation, and region of origin which may increase the risk of infants developing biliary atresia. Furthermore such factors may impact on the response to treatment and development of chronic illness.
Research database title
Biliary Atresia (England and Wales)
Establishment organisation
Kings College Hospital, London
Establishment organisation address
Denmark Hill
London
SE5 9RS