The Canadian Aortopathy and Connective Tissue Disorders Registry

The Canadian Aortopathy and Connective Tissue Disorders Registry (CAN-ACT) is a national database established to advance the understanding of heritable syndromic aortopathies in the population across Canada. These rare conditions are often underrepresented in literature and underrecognized among healthcare professionals. CAN-ACT’s mission is to improve awareness, early identification, and treatment of these disorders while informing advocacy efforts to enhance access to specialized care.

The objectives of our registry are to collect comprehensive data on disease prevalence, types of connective tissue disorders, molecular diagnoses, clinical characteristics, diagnostic timelines, care settings, management strategies, and the impact of these conditions on quality of life and physical activity. By generating robust, Canada-specific insights, CAN-ACT aims to drive evidence-based improvements in clinical practice and healthcare policy.