The Hearts in Rhythm Organization, more commonly known as “HiRO”, is an interdisciplinary network of Canadian heart rhythm specialists, researchers, genetic counsellors, nurses, and patients and family partners. Through the integration of clinical excellence, research, and patient engagement, HiRO is committed to improving the detection and care of patients and families affected by inherited arrhythmia and cardiomyopathy conditions.
Within the research arm of HiRO, we are pleased to announce the recent creation of the National HiRO Registry. The National HiRO Registry is the product of merging our existing National disease-specific registries and is the upshot of a sixteen-year history, since the establishment of the Cardiac Arrest Survivors with Preserved Ejection Fraction (CASPER) registry by Dr. Andrew Krahn.
Today, the National HiRO Registry houses patient data from 20 dedicated adult and pediatric Canadian cardiogenetic sites, with the coordinating center at our UBC/St. Paul’s Hospital site. There are 4790 participants enrolled, with 1787 biobank samples. Due to the rare and complex nature of inherited arrhythmia and cardiomyopathy conditions, this comprehensive registry will be the resource for researchers to draw upon to answer their novel research questions and ultimately further the understanding, detection and care of patients with these conditions.
To learn more about the organization, please visit our website (heartsinrhythm.ca) and keep in touch with us on Twitter and Facebook (@heartsinrhythm)! The HiRO Design Paper is available free online in full text.