Program to Identify and Follow Adults With Primary Biliary Cholangitis Who Are Lost to Care

What this Trial Is About

Primary biliary cholangitis PBC is a chronic liver disease where the immune system attacks the bile ducts inside the liver, leading to issues like cholestasis, inflammation, and eventually liver cirrhosis if untreated. It progresses slowly and requires early diagnosis and careful management. Treatment with ursodeoxycholic acid UDCA is the first option, but about 40% of patients do not respond well to it. Obeticholic acid OCA is used as a second-line therapy for those who do not respond or cannot tolerate UDCA. The study aims to identify patients with PBC who may have been lost to follow-up and assess their clinical and demographic characteristics to improve disease management. This observational study uses computerized data to find patients with positive anti-mitochondrial antibodies AMA or specific anti-nuclear antibodies ANA related to PBC from hospital databases. The goal is to detect those who have not been monitored properly and provide access to specialized care. This study does not involve new treatments but focuses on improving identification and follow-up of PBC patients. It plans to measure the percentage of patients correctly diagnosed and monitored versus those lost to follow-up. Participants are adults aged 18 years and older with positive AMA or ANA markers for PBC identified through hospital records. The study will review their medical and demographic information to understand their disease status and follow-up history. The main outcome is to evaluate how many patients are being properly monitored in specialized health care compared to those lost to follow-up. The study is led by Hospital Mutua de Terrassa and is expected to continue until the end of 2028.

Detection Program for Patients With Primary Biliary Cholangitis Lost in the System