title: The Canadian Biliary Atresia Registry: Improving the care of Canadian infants with biliary atresia.
abstract: Biliary atresia is the most common cause of end-stage liver disease and liver cirrhosis in children, and the leading indication for liver transplantation in the paediatric population. There is no cure for biliary atresia; however, timely diagnosis and early infant age at surgical intervention using the Kasai portoenterostomy optimize the prognosis. Late referral is a significant problem in Canada and elsewhere. There is also a lack of standardized care practices among treating centres in this country. Biliary atresia registries currently exist across Europe, Asia and the United States. They have provided important evidence-based information to initiate changes to biliary atresia care in their countries with improvements in outcome. The Canadian Biliary Atresia Registry was initiated in 2013 for the purpose of identifying best standards of care, enhancing public education, facilitating knowledge translation and advocating for novel national public health policy programs to improve the outcomes of Canadian infants with biliary atresia.
authors.affiliation: Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Quebec.
authors.forename: Alison E
authors.initials: AE
authors.lastname: Butler
authors.affiliation: Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Quebec.
authors.forename: Richard A
authors.initials: RA
authors.lastname: Schreiber
authors.affiliation: Department of Surgery, Dalhousie University, Halifax, Nova Scotia, Quebec.
authors.forename: Natalie
authors.initials: N
authors.lastname: Yanchar
authors.affiliation: Division of Pediatric General and Thoracic Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec.
authors.forename: Sherif
authors.initials: S
authors.lastname: Emil
authors.affiliation: Division of Pediatric General and Thoracic Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec.
authors.forename: Jean-Martin
authors.initials: JM
authors.lastname: Laberge
keywords: Biliary atresia; Databases; Delivery of Health Care; Paediatric liver disease; Registries