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Eur J Pediatr Surg 2015; 25(06): 469-473
DOI: 10.1055/s-0035-1569152
Review Article
Georg Thieme Verlag KG Stuttgart · New York

Registries for Biliary Atresia and Related Disorders

Claus Petersen
1   Department of Pediatric Surgery, Hannover Medical School, Hannover, Germany
,
Omid Madadi-Sanjani
1   Department of Pediatric Surgery, Hannover Medical School, Hannover, Germany
› Author Affiliations
Further Information

Publication History

19 October 2015

19 October 2015

Publication Date:
07 December 2015 (online)

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Abstract

Most neonatal cholestatic disorders are rare diseases (RD), but they represent the leading indication for pediatric liver transplantation. From the pediatric surgical point of view, biliary atresia (BA) and choledochal cyst are from particular interest because diagnostic pathways and therapeutic algorithms are diverging as well as outcome parameters of follow-up studies. In addition, screening programs for BA are still at an early stage while transition of those patients with and without liver transplantation is not established yet. The newly created Web site www.bard-online.com focuses on BA and related diseases and includes decentralized online registries, information for patients and health workers, as well as a platform for interdisciplinary communication and service offerings. This initiative was started to compensate for disadvantages for patients with RD and to help unifying the community of clinicians and researchers in this field.

Keywords

biliary atresia - neonatal cholestasis - registries - choledochal cyst
 

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