We have combined our national CASPER, ARVC and LQTS data with the addition of Brugada data into one registry: the National HiRO Registry. We have 19 centers across Canada that are enrolling into this registry. This comprehensive registry allows for better use of our resources, more efficient knowledge translation efforts and an increased ability to answer new research questions. The National HiRO Registry aims to involve the majority of Canadian inherited heart rhythm and cardiomyopathy patients in clinical research to develop a large registry of participants and their family members affected by genetic conditions that can lead to sudden cardiac arrest and death.
The National HiRO Registry enrolls willing participants who experience an unexplained cardiac arrest or who are diagnosed with an inherited heart rhythm or cardiomyopathy condition, as well as their first- and second-degree relatives.
What began as local data of cardiac arrest survivors in 2004 in London, Ontario under the leadership of Dr. Krahn is now a national dataset with bio bank samples and robust data. Unexplained Cardiac Arrest patients and their family members undergo standardized testing for evidence of primary electrical disease and latent cardiomyopathy along with clinical genetics screening of affected individuals based on an evident or unmasked phenotype. There are currently over 1500 participants enrolled.
Data from participants with a definite or borderline diagnosis of ARVC (arrhythmogenic right ventricular cardiomyopathy) and their family members from across Canada are collected to determine the nature of condition and their short-term outcomes. Participants are enrolled if they have a diagnosis of ARVC according to the 2010 Task Force Criteria or if there is a pathogenic mutation or a variant of unknown significance in the affected patient or their family member. There are currently over 800 participants enrolled.
The National LQTS data aims to better identify long QT syndrome (LQTS) patients and relevant risk factors, and to increase our understanding of genotype-phenotype correlations. This data collected will allow for a greater understanding for LQTS events and a translation of this knowledge into improving care and outcomes. Data from over 1000 participants with LQTS and their first-degree relatives are enrolled.
The pathophysiology of Brugada Syndrome remains largely unknown despite research over the last few decades. Participants with Brugada Syndrome and their first degree relatives will be enrolled.
Room 220 - 1033 Davie Street, Vancouver BC, V6E 1M7Team Lead
Dr. Andrew Krahn MD, FRCPC, FHRSProject Managers: