With rare conditions such as childhood liver disease, information in relation to existing cases contributes greatly to our understanding. The National Biliary Atresia Registry is a big part of this. It was set up in 1999 when the Department of Health for England and Wales concentrated medical and surgical resources for infants with suspected biliary atresia into three English centres – Leeds Children’s Hospital, Birmingham Children’s Hospital and Kings College Hospital in London.
How does it work?
Once a diagnosis of biliary atresia (in England or Wales) is made, the data on the date and area of birth, type of atresia and the date and type of initial surgery is logged on the registry. Information is also collected on parental ethnicity and the presence of any other congenital abnormalities (a heart abnormality for example) . The outcome after surgery is also noted (ie whether jaundice has been cleared or not) and also whether a liver transplant has taken place. Information is stored until the child concerned reaches their 16th birthday but individuals’ names and addresses are not recorded.
Where is the data stored ?
All data is collected from the three national centres where surgery takes place and stored electronically in a separate secure server in Kings College Hospital.
“The aim of the Registry is to provide accurate national data on how successful treatment is over the short, medium and longer term, together with information on other factors which may influence the outcome such as your ethnicity or where you come from,” explains Professor Mark Davenport of Kings College Hospital. “So by simply being on the database, families are playing their part in helping us to learn more about this condition.”
Official recognition
The Secretary of State for Health and Social Care following advice from the confidentiality Advisory Group (CAG) has provided support for the Biliary Atresia Registry to process confidential patient information without consent under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (section 251 support) and that the data storage is compliant with EU General Data Protection Regulation 2018 (GDPR).
Opt-Out
Although we strongly believe that collection of clinical data and knowledge of all children with biliary atresia is important, parents have the legal right to withdraw their child from the Registry by writing to the address below.
If you have any comments or questions about the Biliary Atresia Registry, please contact Prof Mark Davenport, Dept of Paediatric Surgery, Kings College Hospital, London SE5 9RS. Email mark.davenport@nhs.net. Tel: 0203 299 3350.
