Primary Sclerosing Cholangitis in Children

This study follows children and young adults with primary sclerosing cholangitis (PSC), a rare disease in which the bile ducts inside and outside the liver become inflamed and scarred. This scarring narrows the bile ducts over time, leading to serious liver damage. PSC often occurs alongside inflammatory bowel disease and can eventually require a liver transplant. Because PSC is rare — and especially uncommon in young people — there is limited data on how the disease progresses, what factors affect outcomes, and which treatments work best. This observational registry will follow participants over many years to build that evidence base. You may be eligible if: - You are between 2 and 25 years old - You have been diagnosed with large duct PSC (confirmed by cholangiogram showing typical changes) OR small duct PSC (confirmed by liver biopsy showing specific features) - You are willing to comply with study procedures over the long term You may NOT be eligible if: - You have had a liver transplant or bone marrow transplant - You have a primary or acquired immunodeficiency predisposing to secondary sclerosing cholangitis - You have histiocytosis, ischemic cholangitis, portal vein thrombosis with biliopathy, or recurrent pyogenic cholangitis - You have hepatocellular carcinoma, hepatoblastoma, cystic fibrosis, biliary atresia, Caroli disease, Wilson's disease, glycogen storage disorder, or alpha-1-antitrypsin deficiency - You have systemic lupus erythematosus - You are currently pregnant Talk to your doctor to see if this trial is right for you.