A Prospective Database of Infants With Cholestasis

This is a multi-center project to establish a prospective database of clinical information and a repository of blood and tissue samples from children with diagnoses of neonatal liver diseases, such as biliary atresia and neonatal hepatitis, in order to perform research in these liver problems. Children were screened and enrolled at presentation at the participating pediatric liver sites. Subjects diagnosed with biliary atresia were followed intensively for the first year, at 18 months of age, and then annually up to 15 years of age. Other subjects diagnosed with cholestasis were followed on the same schedule; if there was complete (clinical and biochemical) resolution of their underlying liver disease off all therapy, there was one follow up visit within one year (preferably scheduled at the time of the next planned follow up visit or at 12 months of age, whichever was later) for data collection and to obtain blood samples. The development of a serum and tissue bank of specimens from children with various neonatal cholestatic disorders are used for future investigations into the etiology and pathogenesis of hepatobiliary injury in the infant.

The data package available for request includes raw and analysis datasets from multiple publications including combined data from the <a href="https://repository.niddk.nih.gov/studies/basic/">BASIC</a> and <a href="https://repository.niddk.nih.gov/studies/logic/">LOGIC</a> studies.