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.

Highlights

  • 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

  • In addition to evaluating patient outcomes, these registries have led to improvements in cooperation, communication, education and disease awareness among health care professionals, paraprofessionals, public policy personnel and the general public involved in Biliary atresia (BA) care in their respective countries

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Summary

Introduction

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. The Canadian Biliary Atresia Registry (CBAR) is a new data collection project that will prospectively follow the assessment, management and outcomes of all BA patients nationally, with the goal of evaluating and improving practices in BA care.

Results
Conclusion

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