Participating in the Biliary Atresia Research Consortium (BARC) Network

The Biliary Atresia Research Consortium (BARC) Network studies infants that are diagnosed before the age of six months with cholestasis (blockage of bile flow). Cholestasis can happen for many different reasons. It can result from a brief illness or from injury to the liver; when these are the causes, it will frequently go away without any special treatment. It can be caused by a number of inherited conditions (metabolic disease) that may need treatment. It can be caused by drugs and it often goes away when the drug is stopped. Cholestasis can also be the result of more serious liver diseases such as idiopathic neonatal hepatitis or biliary atresia.

The goal of the BARC network is to collect information from infant's and children's medical records and scans, blood, urine, and tissue samples in order to understand the causes of these diseases and to improve the diagnosis and treatment of infants and children with these diseases. BARC is also conducting a clinical trial to try to improve the treatment of biliary atresia. All of the information obtained in these studies is confidential and participation in these studies is only possible with the written informed consent of the child’s parents or legal guardian. No names or identifying information are used in the study. Currently, the BARC network is enrolling patients into two studies:

• PROBE: A prospective study of children with cholestasis

• START: A clinical trial to test the use of steroids in the treatment of biliary atresia