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. 2016 Apr;21(3):131-4.

The Canadian Biliary Atresia Registry: Improving the care of Canadian infants with biliary atresia

Alison E Butler  1 , Richard A Schreiber  1 , Natalie Yanchar  2 , Sherif Emil  3 , Jean-Martin Laberge  3 ; Canadian Biliary Atresia Registry
Affiliations

The Canadian Biliary Atresia Registry: Improving the care of Canadian infants with biliary atresia

Alison E Butler et al. Paediatr Child Health. 2016 Apr.

Abstract
in English, French

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.

L’atrésie des voies biliaires est la principale cause d’insuffisance hépatique terminale et de cirrhose chez les enfants, et la première indication de transplantation du foie au sein de la population d’âge pédiatrique. Aucun traitement ne guérit l’atrésie des voies biliaires, mais un diagnostic rapide et le jeune âge du nourrisson au moment de l’intervention chirurgicale par hépato-porto-entérostomie de Kasai optimisent le pronostic. L’orientation tardive vers un spécialiste constitue un problème important au Canada et ailleurs. Par ailleurs, il n’existe pas de protocole de soins standardisés dans les centres de traitement du pays. On trouve des registres d’atrésie des voies biliaires en Europe, en Asie et aux États-Unis, lesquels ont fourni de l’information importante fondée sur des données probantes pour susciter des changements aux soins de cette affection dans ces pays et favoriser une amélioration des résultats. Le Registre canadien d’atrésie des voies biliaires a été créé en 2013 pour définir les meilleures normes de soins, améliorer l’éducation publique, favoriser le transfert des connaissances et prôner de nouveaux programmes de politiques en santé publique en vue d’améliorer le sort des nourrissons canadiens présentant une atrésie des voies biliaires.

Keywords: Biliary atresia; Databases; Delivery of Health Care; Paediatric liver disease; Registries.

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Figures

Figure 1)
Figure 1)
Overall survival of patients diagnosed with biliary atresia according to country. UK United Kingdom; US United States
Figure 2)
Figure 2)
Patient survival with native liver according to country. UK United Kingdom; US United States
See this image and copyright information in PMC

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