Newborn liver diseases are rare with the most frequent one being biliary atresia (BA), having an incidence in Europe of 1/18 000 live births. The rarity of the biliary atresia has impaired high-quality clinical studies because even highly specialized individual centers lack sufficient numbers of patients to generate meaningful studies. To address this fundamental problem several countries have created national clinical databases to track biliary atresia and its outcome.
The biliary atresia outcome survey sponsored by the Observatoire Français de l’Atrésie des Voies Biliaires in France highlighted the impact of the case frequency in individual centres on results of surgery. This was confirmed by two national surveys of outcome in BA in the United Kingdom, which led directly to an unprecedented change in national health policy with rigid centralization of the management of all BA patients into only three supra-regional centres. The European Biliary Atresia Registry (EBAR) was set up in 2001 and offered a central registry facility to those countries without national registries. Over a 5 year period, about 700 patients from 100 centres in 23 different European countries were registered. National studies have also been intiated in Japan, the Netherlands, Canada, and Switzerland to examine biliary atresia outcome. However, their published results are difficult to compare due to the variations among the clinical the patient data sets and outcome parameters used in these studies.
The purpose of BARD-online is to to provide opportunity for uniformity of patient data in an expanded new databank while preserving existing registries for any of the biliary atresia related disorders (BARD). BARD will also aim to develop a decentralized bio-bank coordinated among registered centers, for liver biopsy tissue as well as blood and other biological samples from patients and, optionally, from their parents. Paticipating centres will be offered registration and bio-storage capacity according to preset guidelines and each centre will have access to their own patient samples.