Understanding what causes primary sclerosing cholangitis

Plain-English translation of NCT04685200 on ClinicalTrials.gov ↗ · Source last updated September 2026 · Translation generated August 2026 · How we translate trials

What is this trial?

This study aims to understand what causes primary sclerosing cholangitis (PSC)—a rare liver disease where the bile ducts become scarred and damaged over time. Researchers believe the disease develops when a person's immune system mistakenly responds to certain bacteria, and that different genetic and bacterial factors may explain why the disease looks different in different people. By studying your blood, tissue samples, and medical history alongside information from family members and healthy controls, scientists hope to identify key markers that could one day improve diagnosis and treatment.

Currently, doctors don't fully understand why PSC develops or how to predict which patients will get sicker faster. This research could help identify new ways to diagnose the disease earlier and predict disease progression, potentially opening doors to better treatments in the future.

Do you qualify?

You likely qualify if…

you have been diagnosed with primary sclerosing cholangitis confirmed by imaging tests like MRCP or ERCP
you are 18 years of age or older
you are willing to comply with all study procedures and be available for the study duration
you are able to follow lifestyle guidelines throughout the study (including avoiding probiotics)

You likely don't qualify if…

you are pregnant or lactating, or a woman of childbearing age not using birth control
you have had a liver transplant in the past
you have signs of advanced liver disease such as fluid in the abdomen, bleeding from enlarged veins, or hepatic encephalopathy
you have a current serious infection (bacterial, viral, or fungal)
you are taking blood thinners or antiplatelet medications other than aspirin

What participation looks like

If you have PSC, you will undergo comprehensive testing including blood draws, imaging scans (MRCP or MRI), and an endoscopic procedure with tissue biopsies to collect samples from your bile ducts and liver. You'll also provide nasal swabs, saliva samples, and stool samples. Family members and people living with you may be asked to provide blood, nasal swabs, saliva, and stool samples as controls. The study involves detailed characterization of your disease through multiple visits and collection of samples to help researchers understand the genetic, immune, and microbial factors driving your condition.

Understanding what causes primary sclerosing cholangitis

What is this trial?

Do you qualify?

What participation looks like

Trial locations(1 site)