Actively Recruiting
Primary Sclerosing Cholangitis in Children
Led by Arbor Research Collaborative for Health · Updated on 2025-09-08
1000
Participants Needed
12
Research Sites
387 weeks
Total Duration
On this page
Sponsors
A
Arbor Research Collaborative for Health
Lead Sponsor
N
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Primary sclerosing cholangitis (PSC) is a rare liver disease that damages the liver's bile ducts. Bile ducts are tiny tubes that carry bile from the liver to the small intestine. Bile is a liquid produced by the liver that helps us absorb and use the nutrients in the food we eat. In people with PSC, the bile backs up into the liver and will damage it, causing scarring of the liver. The purposes of this study are to: * Collect medical and other data to learn more about PSC, how it progresses, and identify factors that may cause the disease to progress more quickly. * Ask questions about how PSC symptoms affect your child's life to learn more about its impact on your child's daily functioning * Children with PSC who are seen at one of the participating clinical sites in the Childhood Liver Disease Research Network (ChiLDReN) will be asked to contribute information, DNA, and other specimens. The information and specimens will be available to investigators to carry out approved research aimed at learning more about the possible causes and long-term effects of PSC.
CONDITIONS
Official Title
Primary Sclerosing Cholangitis in Children
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Aged 2 through 25 years at time of screening
- Clinical diagnosis of large or small duct primary sclerosing cholangitis (PSC) made before enrollment
- Large duct PSC diagnosis confirmed by cholangiogram reviewed with site radiologist
- Small duct PSC diagnosis confirmed by liver biopsy reviewed with site pathologist
- Willingness to comply with all study procedures and availability for study duration
- Able to provide informed consent or assent
- For imaging study participants: aged 8 through 25 years, no contraindication to MRI, no skin condition aggravated by MREL, and meet all other PSC study eligibility
You will not qualify if you...
- History of liver transplantation
- History of bone marrow transplantation
- History of primary or acquired immunodeficiency predisposing to secondary sclerosing cholangitis
- History of histiocytosis, including Langerhans cell histiocytosis or hemophagocytic lymphohistiocytosis
- History of ischemic cholangitis
- History of portal vein thrombosis with biliopathy, veno-occlusive disease, or abdominal radiation vasculopathy
- History of recurrent pyogenic cholangitis
- History of biliary tract surgery for cholecystolithiasis prior to diagnostic cholangiogram or liver biopsy
- History of biliary tract surgery for choledochal cyst
- History of hepatocellular carcinoma or hepatoblastoma
- History of surgical biliary trauma
- History of congenital cytomegalovirus hepatitis
- History of sickle cell disease
- History of cystic fibrosis, biliary atresia, Caroli disease/congenital hepatic fibrosis, or progressive familial intrahepatic cholestasis type 3/MDR3 disease
- History of cardiac hepatopathy
- History of metabolic disorders including Wilson's disease, glycogen storage disorder, Alpha-1 Antitrypsin deficiency
- Diagnosis of systemic lupus erythematosus (SLE)
- Concurrent pregnancy at the time of enrollment
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 12 locations
1
Children's Hospital of Los Angeles
Los Angeles, California, United States, 90027
Actively Recruiting
2
Children's Hospital Colorado
Aurora, Colorado, United States, 80045
Actively Recruiting
3
Children's Healthcare of Atlanta
Atlanta, Georgia, United States, 30322
Actively Recruiting
4
Ann & Robert H Lurie Children's Hospital
Chicago, Illinois, United States, 60611
Actively Recruiting
5
Riley Hospital for Children
Indianapolis, Indiana, United States, 46202
Completed
6
Cincinnati Children's Hospital Medical
Cincinnati, Ohio, United States, 45229
Actively Recruiting
7
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
8
UPMC Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, United States, 15224
Actively Recruiting
9
Texas Children's Hospital (Baylor College of Medicine)
Houston, Texas, United States, 77030
Actively Recruiting
10
The University of Utah
Salt Lake City, Utah, United States, 84113
Actively Recruiting
11
Seattle Children's Hospital
Seattle, Washington, United States, 98105
Actively Recruiting
12
The Hospital for Sick Children
Toronto, Ontario, Canada, M5G 1X8
Completed
Research Team
T
Terese A Howell, BS, CCRC
CONTACT
M
Melissa Sexton, BBA, CCRP
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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