Medical status of 219 children with biliary atresia surviving long-term with their native livers: results from a North American multicenter consortium.
Vicky Lee Ng, Barbara H Haber, John C Magee...
https://pubmed.ncbi.nlm.nih.gov/25015575Actively Recruiting
Led by Arbor Research Collaborative for Health · Updated on 2026-06-04
1265
Participants Needed
16
Research Sites
N/A
Total Duration
A
Arbor Research Collaborative for Health
Lead Sponsor
N
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Collaborating Sponsor
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.
CONDITIONS
Biliary Atresia Study in Infants and Children
You may qualify if you...
You will not qualify if you...
Complete this quick 3-step screening to check your eligibility
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 7 years
Participants who have biliary atresia and their native liver are observed to collect clinical information, genetic material, and body fluid samples to study disease progression and related factors.
Annual visits
Total: 16 locations
1
Children's Hospital of Los Angeles
Los Angeles, California, United States, 90027
Actively Recruiting
2
University of California at San Francisco
San Francisco, California, United States, 94143
Completed
3
Children's Hospital Colorado
Aurora, Colorado, United States, 80045
Actively Recruiting
4
Children's Healthcare of Atlanta - Emory University
Atlanta, Georgia, United States, 30322
Actively Recruiting
5
Ann & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, United States, 60614
Actively Recruiting
6
Riley Children's Hospital
Indianapolis, Indiana, United States, 46202
Completed
7
Johns Hopkins School of Medicine
Baltimore, Maryland, United States, 21287
Completed
8
Washington University School of Medicine
St Louis, Missouri, United States, 63110
Completed
9
Mount Sinai Medical Center
New York, New York, United States, 10029
Completed
10
Children's Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Actively Recruiting
11
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
12
UPMC Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, United States, 15224
Completed
13
Texas Children's Hospital (Baylor College of Medicine)
Houston, Texas, United States, 77030
Actively Recruiting
14
University of Utah
Salt Lake City, Utah, United States, 84113
Actively Recruiting
15
Seattle Children's Hospital
Seattle, Washington, United States, 98105
Actively Recruiting
16
Hospital for Sick Children
Toronto, Ontario, Canada, M5G 1X8
Completed
M
Melissa Sexton, BBA, CCRP
M
Melissa Sexton, BBA
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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Vicky Lee Ng, Barbara H Haber, John C Magee...
https://pubmed.ncbi.nlm.nih.gov/25015575