The Hearts in Rhythm Organization: A Canadian National Cardiogenetics Network

Abstract: Background The Hearts in Rhythm Organization (HiRO) is a team of Canadian inherited heart rhythm and cardiomyopathy experts, genetic counsellors, nurses, researchers, patients and families dedicated to the detection of inherited arrhythmias and cardiomyopathies, provision of best therapies and protection from the tragedy of sudden cardiac arrest. Methods Recently, existing disease specific registries were merged into the expanded National HiRO Registry, creating a single common dataset for patients and families with inherited conditions that put them at risk for sudden death in Canada. Eligible patients are invited to participate in the registry and optional biobank from 20 specialized cardiogenetics clinics across Canada. Results Currently, there are 4700 participants enrolled in the National HiRO Registry, with an average of 593 participants enrolled annually over the past five years. The capacity to enable knowledge translation of research findings is built into HiRO’s organizational infrastructure, with three additional working groups (HiRO Clinical Care Committee, HiRO Active Communities Committee and HiRO Annual Symposium Committee), supporting the organization’s current goals and priorities as set alongside patient partners. Conclusion The National HiRO Registry aims to be an integrated research platform to which researchers can pose novel research questions leading to better understanding, detection and clinical care of those living with inherited heart rhythm and cardiomyopathy conditions and ultimately to prevent sudden cardiac death.