Finding and helping patients with a rare bile duct liver disease

This is a detection and outreach program designed to identify patients with primary biliary cholangitis — a rare, slowly progressive liver disease caused by the immune system attacking bile ducts — who may have fallen out of medical care. Researchers will search hospital databases to find patients with specific blood test markers of this disease, then contact them to reconnect them with treatment. The goal is to make sure no patient with this condition is left without the care and medication they need.

Studies show that about one in three patients diagnosed with primary biliary cholangitis stop coming to their appointments and are lost to follow-up, missing out on life-extending treatments. This program exists to find those 'lost' patients and bring them back into care, because early treatment can slow disease progression and prevent serious liver damage.