Biliary Atresia Study

STUDY BASICS

Is your child between 6 months and 17 years old with a diagnosis of biliary atresia? Has your child had the Kasai procedure (surgery to improve bile flow)? If so, your child may be able to participate in a research study to learn more about the long term health of patients who have had the Kasai procedure. Participation by parents is voluntary. Compensation for transportation provided.

STUDY PURPOSE

Biliary atresia is a relatively uncommon gastrointestinal disorder that is diagnosed in newborns, but can cause lifelong complications. Surgical treatments for biliary atresia include the Kasai procedure (surgery to improve bile flow) or liver transplantation. The purpose of this study is to collect information about people with biliary atresia so that researchers will be able to learn more about their long-term health after having the Kasai procedure. Researchers will also collect and store samples of blood and urine from people with biliary atresia, and their parents when possible, to be used in future research about liver disease and to help them learn more about the causes of biliary atresia.

COULD THIS STUDY BE RIGHT FOR YOUR CHILD?

• Age 6 months to 17 years
• Has a diagnosis of biliary atresia
• Has had the Kasai procedure
• Participation by parents is voluntary

WHAT PARTICIPANTS CAN EXPECT

The first visit will include providing a medical history about your child’s liver disease, and collecting blood and urine samples from your child. Parents will also give blood samples. For participants who have not had a liver transplant, one visit will be scheduled every year for 9 years. Visits will be scheduled at the same time as regularly scheduled follow-ups for biliary atresia when possible. Blood samples taken for the study will be drawn at the same time as a regular clinical blood draw. For post-transplant patients, a single visit is required.