Biliary Atresia Long-Term Observation: The BASIC Study

Biliary Atresia Study in Infants, Children and Adults

Protocol Description

The purpose of the multicenter Biliary Atresia Study in Infants, Children and Adults (BASIC) is to collect information on patients with biliary atresia so that researchers will be able to learn more about their long-term health following surgery to improve bile flow (Kasai procedure). Through this study, researchers will collect and store samples of blood and DNA from children and adults with biliary atresia, and their parents, to be used in future research about liver disease and to help them learn more about the causes of biliary atresia. This study is an initiative of the Childhood Liver Disease Research Network (ChiLDReN). The study will take place at UPMC Children’s Hospital of Pittsburgh through the University of Pittsburgh.

Eligibility Criteria

Males and females, ages 6 months to 20 years, who have a confirmed diagnosis of biliary atresia are invited to participate in this research study. Biological parents are invited to voluntarily participate.
Males and Females: 6 months to 20 years


During the initial visit, researchers will gather medical history about the participant’s liver disease as well as blood and/or saliva samples. Blood or saliva samples from parents will also be requested for DNA analysis. Participants who have not had a liver transplant will be followed annually until 20 years of age or until they have had a liver transplant. Visits will be scheduled to coincide with the patient’s regularly scheduled follow-up for biliary atresia, when possible. For post-transplant patients, a single visit is required.
Visits: Up to 20 annual visits, based on age at time of enrollment; 1 for post-transplant patients
Duration: Up to 20 years for patients who have not had a liver transplant

Status: Open to Enrollment

Source(s) of Support

National Institute of Diabetes and Digestive and Kidney Diseases

Primary Investigator

Simon Horslen, MD

Contact Information

For more information about the study or enrollment, please contact:
Susan Richey, RN