Grant: Planning and Dissemination Grant - Institute Community Support

The importance of creating the the CANadian Aortopathy and Connective Tissue Disorders (CAN-ACT) Registry stems from the lack of data with regards to the phenotypic and genotypic presentation of pediatric patients with hereditary aortopathies in Canada. Over the last year, the CAN-ACT Registry Steering Committee has made significant progress in establishing the template for the data collection variables and patient questionnaires, in partnership with the Canadian Congenital and Pediatric Cardiology Research Network (CCPCRN). Currently, the next critical step is to evaluate and validate these efforts within the wider heritable aortopathy research and patient community in Canada. To attain this goal, the First CAN-ACT Registry National Investigator Meeting will bring together the co-investigators alongside with various patient-partners. This concerted meeting aims to foster brainstorming, identification, discussion, and validation of emerging and pressing research questions in the field of aortopathies in Canada. A key aspect of the meeting is a session where patient partners openly share their experiences, pinpointing necessary patient-oriented research questions that will drive future meaningful advancements. The meeting creates a synergistic environment where researchers and patient-partners collectively contribute insights, aiming to uncover critical research inquiries that address real-world challenges faced by individuals with heritable aortopathy. Organized jointly by LDSF Canada and the CAN-ACT Registry Steering Committee, this pan-Canadian event hopes to forge a robust network of aortopathy researchers, paving the way for impactful research that addresses the needs of the heritable aortopathy community in Canada.