BASIC is a study to gather information about children with biliary atresia to understand what happens after the Kasai surgery.
The purpose of this national study is to see what influences biliary atresia disease for better or worse after the Kasai surgery and:
- To identify the gene(s) implicated in the etiology of biliary atresia
- To identify polymorphisms that may be important in disease progression such as HLA polymorphisms
- Characterize the natural history of the older, non-transplanted child with biliary atresia
- Confirmed diagnosis of biliary atresia
- Patient’s age = 1
- Patient has their native liver or has had a confirmed liver transplant
- Parent/guardian informed written consent
Patients may have long-term care coordinated at a center not participating in ChiLDREN
Study participants will be seen in the research clinic once per year for 5 years or until they have a liver transplant. Each research visit will include a physical examination as well as the collection of blood an urine samples. Biological parents will be asked to give a blood sample for research purposes.
If a study participant undergoes a liver transplant during the course of the study, tissues from the liver that was removed and not needed for clinical purposes will be collected for research.
If a study participant has already had a liver transplant, then only a single visit will constitute the study and wll include a physical examination, review of past medical history including family history and a collection of blood from the participant and the biological parents.