Biliary atresia and related disorders (BARD) in newborns are rare liver diseases, which are among the most frequent indication for liver transplantation in the pediatirc population. (LTx). For most of these newborn liver diseases, the etiology, pathophysiology and natural course of disease are not yet understood and the current standards of care often do not prevent the progression to liver fibrosis (scariing) and liver failure. The rarity of these conditions and their diverseness hamper the capacity for even highly specialized centers to perform high-quality clinical studies and basic science research. In order to compensate for this limitation, several national and international collaborations have been initiated. However, none of them have yet been linked to an interdisciplinary and international research program. The purpose of the BARD-registries is to synchronize and help coordinate exisiting patient datasets into a multipurpose internet based registry.
Our vision is to establish a resevoir of international collaborative patient data to provide opportunity for very large patient studies to better understand the pathophysiology and natural course of these rare newborn liver diseases. Our overriding goal is to improve diagnostics and treatment, of affected children and to advance research. We believe this effort would ultimately improve patient outcomes, their quality of life and the demand for liver transplantation especially given the global problem of limited availability of donor organs. Additionally, the BARD website will strive to assist patients and their families to find reliable information about these rare diseases and to facilitate the development of disease-related parental self-help groups.