Introducing EBAR - the European Biliary Atresia Registry of the ERN RARE-LIVER
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- Опубликовано: 24 дек 2024
- 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.
A pan-European registry collecting data on incidence, diagnostic features and both standard and novel treatments of BA was needed to improve the quality of care.
To meet this need, the ERN RARE-LIVER Biliary Atresia Registry (EBAR) was implemented in the up-and-running R-LIVER registry to analyse and improve care for BA. EBAR can facilitate standardization of care, implementation of novel therapies and connect centres to drive research on BA.
EBAR is open to all members and non-members of ERN RARE-LIVER. Contributors retain ownership of entered data and will be compensated financially.
For more information see our website: www.rare-liver.eu