This study is creating a collection of samples and health information, called a biobank, to help researchers better understand cholestatic liver diseases like primary biliary cirrhosis/cholangitis (PBC) and primary sclerosing cholangitis (PSC). The goal is to learn how these diseases start and progress, which could lead to new ways to detect complications early and predict how the disease will develop. You may be able to join if you are between 18 and 85 years old and have been diagnosed with PSC based on standard criteria, including signs of chronic cholestasis and specific findings from imaging tests. This study aims to enroll 9150 participants over 20 years.

Study design

This is an observational study, meaning researchers will collect information without giving any specific treatments. It plans to include 9150 participants.

What's involved

Blood, saliva, stool, and urine samples will be collected periodically during your clinic visits, through mail-home kits, or by a remote phlebotomist. If you have an ERCP (Endoscopic Retrograde Cholangiopancreatography) procedure at Mayo Clinic for clinical reasons, bile and bile duct cells will also be collected.

Compensation

Not stated in the trial record.

Follow-up

Participants will be part of the study for 20 years, as the primary endpoint measures the number of participants over this time.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.