Biliary Atresia Register planned for December 2022
Biliary Atresia (BA) is a rare liver disease of infancy with unclear etiology potentially leading to biliary cirrhosis and liver failure in early life. BA is still one of the main indications for paediatric liver transplantation. The present model of care for BA in Europe is not well defined, and only 50 percent of patients in Europe are treated in centres with multidisciplinary expertise which is associated with a non-favorable outcome. Novel approaches to therapy and diagnostics are currently being studied, however, their impact on outcome is still unclear. A pan-European registry collecting data on incidence, diagnostic features and both standard and novel treatments of BA is needed to improve of quality of care.
For this purpose, the prospective ERN RARE LIVER Biliary Atresia Registry (EBAR) was implemented in the up-and-running R-LIVER registry. EBAR is open to all members and non-members of ERN RARE LIVER. Contributors retain ownership of entered data and will be compensated financially. The launch of this registry is planned for December 2022 and members of ERN RARE LIVER will soon receive a welcome package with an invitation to contribute.