Study of Biliary Atresia in Children and Young Adults with Their Native Liver

What this Trial Is About

Researchers are studying biliary atresia, a liver condition in infants and children, to better understand what causes it and how it progresses over time. This observational study aims to identify the genes involved in biliary atresia and to describe the natural history of older children who still have their native liver. The study is conducted by the Childhood Liver Disease Research Network funded by the National Institute of Diabetes & Digestive and Kidney Diseases. The study involves collecting clinical information, genetic material, and body fluid samples from participants once, usually at the start of the study. Participants include children and young adults aged over 6 months up to 20 years who have a confirmed diagnosis of biliary atresia and still have their native liver. Researchers will follow these participants yearly to gather observational data about disease progression and quality of life. Participants will be asked to attend yearly follow-up visits where observational information will be collected, including health status and growth measurements. The primary measurement is to identify genetic factors linked to biliary atresia, while secondary outcomes include understanding disease progression and quality of life over time. The study tracks important health events, growth, and nutritional status to help predict outcomes. Participation may last several years, with annual visits to monitor the condition and collect data.

Biliary Atresia Study in Infants and Children