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Research on biliary atresia has been hampered its rarity, lack of common criteria for diagnosis and absence of data quality control. Existing registries (e.g. EBAR, French Observatory, UK National) have now agreed on the necessity to ensure common standards on these issues.
After collaborative meetings in Birmingham 2003 and Paris 2004, the following minimal common dataset (MCD) was adopted for use among participating registries and observatories. The MCD is composed of two pages, a diagnostic flowchart and a data entry page.
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