Canadian Network Registry Study for Patients with Primary Biliary Cholangitis, Autoimmune Hepatitis, or Overlap Syndrome

What this Trial Is About

Researchers are conducting the Canadian Network for Autoimmune Liver Disease CaNAL, a long-term observational study involving patients diagnosed with Primary Biliary Cholangitis PBC, Autoimmune Hepatitis AIH, or overlap syndrome. These rare, slowly progressing liver diseases can lead to serious complications like cirrhosis, liver cancer, liver failure, or premature death. The study aims to create a nationwide registry to better understand these diseases by collecting detailed patient data from major Canadian centers. This study does not involve any treatment interventions. Instead, it observes patients during their usual care visits across multiple centers. The registry gathers a wide range of information including patient characteristics, lab results, treatment responses, quality of life measures, environmental exposures, and transplant outcomes. It also aims to identify risk factors and biomarkers related to disease progression, treatment response, and outcomes post-transplant. Participants will be followed over time, with data collected regularly, including biochemical tests and patient-reported outcomes like quality of life and pruritus scales, for an average of six months or more. The primary outcome measured is liver transplant-free survival over up to six years or until death or transplant. This study supports better understanding of autoimmune liver diseases and will provide a platform for future targeted research and clinical trials.

Canadian Network for Autoimmune Liver Disease