Observational Study of Primary Sclerosing Cholangitis in Children
This study is looking to learn more about Primary Sclerosing Cholangitis (PSC) in children, a rare liver disease that damages the liver's bile ducts (tiny tubes that carry bile from the liver to the small intestine). Researchers want to understand how PSC progresses and identify factors that might make the disease get worse faster. They will collect medical information and other data from children and young adults with PSC. The goal is to better understand the different types of PSC, including those with or without Inflammatory Bowel Disease (IBD) or Autoimmune Hepatitis (AIH). This is an observational study, meaning no new treatments are being tested. You may be able to join if you are between 2 and 25 years old and have a diagnosis of PSC. The study aims to enroll 1000 participants, but its current status is unclear.
- Study design
- This is an observational study aiming to enroll 1000 participants. It will characterize major phenotypes of PSC.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be characterized for up to 10 years.
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Primary Sclerosing Cholangitis in Children
At a glance
Conditions
Where it's being run
12 sites across 11 statesStudy leadership
- Cara Mack, MD · STUDY_CHAIR · Medical College of Wisconsin-Milwaukee
- Ed Doo, MD · STUDY_DIRECTOR · National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- Katrina Loh, MD · STUDY_DIRECTOR · National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- John Magee, MD · PRINCIPAL_INVESTIGATOR · University of Michigan
- Lisa Henn, PhD · PRINCIPAL_INVESTIGATOR · Arbor Research Collaborative for Health
Who to contact
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Do you actually qualify for this trial?
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Inclusion
What this trial measures
- To characterize the major phenotypes of PSC including patients with large duct or small duct disease, with and without Inflammatory Bowel Disease (IBD), and with and without Auto Immune Hepatitis (AIH)up to 10 years
Data will be collected on all phenotypes of PSC but attention is focused on how the intestinal inflammation and clinical activity of Inflammatory Bowel Disease (IBD) affect the progression of PSC, better classification of patients with features of Auto Immune Hepatitis (AIH), and the implications of bacterial cholangitis amongst all PSC phenotypes. Collection of retrospective clinical and laboratory data from the time of diagnosis of PSC and annual timepoints thereafter. Information regarding clinically important timepoints, laboratory data and FibroScan Liver Stiffness Measurements (LSM) are collected prospectively. Slides/images (if available) from each liver biopsy obtained at the time of diagnosis of PSC and thereafter and from the explanted liver recovered at the time of liver transplantation will undergo central review. Cholangiography results (MRCP, ERCP) will also undergo central review.