Observational Study of Biliary Atresia in Infants and Children

This study is looking into biliary atresia (a rare liver disease in infants) to understand what causes it and how it progresses, especially in older children. Researchers want to identify the genes involved in biliary atresia and learn more about how the disease affects children who are not undergoing liver transplantation. They will collect clinical information, genetic material, and body fluid samples from about 1265 participants. To join, you must have a confirmed diagnosis of biliary atresia and be between 6 months and 20 years old. The main goal is to find the specific genes linked to biliary atresia.

Study design
This is an observational study, meaning researchers will collect information without giving any new treatments. It plans to include about 1265 participants.
What's involved
Specimens for genetic analysis are collected once, usually at the beginning of the study. Participants enrolled at 20 years of age will have one visit.
Compensation
Not stated in the trial record.
Follow-up
Not specified.

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NCT00345553

Biliary Atresia Study in Infants and Children

Recruiting
Not specifiedAges 6–20Observational
Arbor Research Collaborative for Health
~1,265 participants
Updated 2026-06-04 on ClinicalTrials.gov

At a glance

Recruiting sites
9 of 16 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
To identify the gene or genes implicated in the etiology of BA
Measured over Specimens for this aim are collected once during study, usually at baseline.
Biliary Atresia
16 sites across 14 states
California2
Pennsylvania2
Colorado1
Georgia1
Illinois1
Indiana1
Maryland1
Missouri1
  • Sanjiv Harpavat, MD · STUDY_CHAIR · Texas Children's/Baylor College of Medicine
  • Ed Doo, MD · STUDY_DIRECTOR · National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
  • John C Magee, MD · PRINCIPAL_INVESTIGATOR · University of Michigan
  • Lisa Henn, PhD · PRINCIPAL_INVESTIGATOR · Arbor Research Collaborative for Health - Data Coordinating Center
  • Katrina Loh, MD · STUDY_DIRECTOR · National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

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  • To identify the gene or genes implicated in the etiology of BASpecimens for this aim are collected once during study, usually at baseline.

    The genetics of BA may be investigated on two levels. The first is to identify a group of patients whose etiology is a result of a genetic defect and the second is to examine the influence of genetics on disease acquisition.