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PBC and AIH are rare and slowly progressive liver diseases that can lead to cirrhosis, liver cancer, liver failure requiring transplantation, and premature death. The rarity and slowly progressive nature of these autoimmune liver diseases make them difficult to study and only a large-scale approach combining patient data from multiple centres across Canada will allow new insights.

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The primary aim of CaNAL is to build a Canadian registry of patients with PBC, AIH, and overlap syndrome. CaNAL captures patient characteristics, laboratory assessments, natural history, patient-reported outcomes including quality of life measures and environmental exposures, response to treatment, and pre- and post-transplant outcomes.

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CaNAL collects both retrospective and prospective long-term follow-up data on patients diagnosed with PBC, AIH, and overlap syndrome. Working collaboratively with health centres across Canada, CaNAL aims to build a comprehensive registry that captures patient demographics, disease presentation and progression, quality of life, and patient outcomes.

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This registry will enhance understanding of autoimmune liver diseases, provide insight into etiology and pathogenesis, and identify risk factors associated with important outcomes (i.e., response to treatment, progression to transplant, risk of liver cancer, and recurrent disease after transplant). The data collected in the CaNAL registry will allow for the identification of biomarkers to help predict disease progression or non-response to therapy, as well as aid in the earlier diagnosis of autoimmune liver disease to ensure timely treatment and prevent disease progression.

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The project was initiated in mid-2017, with recruitment and study data collection beginning in 2018.