Canadian Biliary Atresia Registry

Establishing Best Practices for the Assessment, Management, and Outcome of Biliary Atresia in Canada

Site Principal Investigator:
Mohsin Rashid, MBBS, MEd, FRCP(C)
Division of Gastroenterology, Department of Pediatrics
IWK Health Centre and Dalhousie University

Sponsor: This network is jointly funded by the Children with Intestinal and Liver Diseases Foundation (CH.I.L.D.) and Montreal Children’s Hospital.

Inclusion/Exclusion criteria:

• Diagnosed with Biliary Atresia
• Between four and 17 years old, inclusive.

Purpose: To create a national Biliary Atresia (BA) registry.

In Canada, BA affects about 25 newborns each year. The current standard of care provided is surgery and, in some cases, liver transplantation. The knowledge gained from a national BA registry may lead to a decrease in the number of liver transplantations needed.

The registry is taking place at 15 university-based hospitals across Canada. At the IWK Health Centre, we expect to see about two infants with newly recognized BA each year. All will be invited to be a part of this registry.