The Hearts in Rhythm Organization: A Canadian National Cardiogenetics Network
Brianna Davies, MSc, CGC,
Jason D. Roberts, MD,
Rafik Tadros, MD, PhD,
Martin S. Green, MD,
Jeffrey S. Healey, MD,
Christopher S. Simpson, MD,
Shubhayan Sanatani, MD,
Christian Steinberg, MD,
Ciorsti MacIntyre, MD,
Paul Angaran, MD,
Henry Duff, MD,
Robert Hamilton, MD,
Laura Arbour, MD,
Richard Leather, MD,
Colette Seifer, MD,
Anne Fournier, MD,
Joseph Atallah, MD,
Shane Kimber, MD,
Bhavanesh Makanjee, MD,
Wael Alqarawi, MD,
Julia Cadrin-Tourigny, MD,
Jacqueline Joza, MD,
Jimmy McKinney, MD,
Stephanie Clarke, MSc, CGC, CCGC,
Zachary W.M. Laksman, MD,
Karen Gibbs, RN, CCRP,
Vuk Vuksanovic, PhD,
Martin Gardner, MD,
Mario Talajic, MD,
Andrew D. Krahn, MD
Affiliations
Brianna Davies, MSc, CGC
Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
Jason D. Roberts, MD
Section of Cardiac Electrophysiology, Division of Cardiology, Department of Medicine, Western University, London, Ontario, Canada
Rafik Tadros, MD, PhD
Cardiovascular Genetics Center, Montreal Heart Institute, Montreal, Québec, Canada; Department of Medicine, Université de Montréal, Montreal, Québec, Canada
Martin S. Green, MD
Heart Institute, University of Ottawa, Ottawa, Ontario, Canada
Jeffrey S. Healey, MD
Population Health Research Institute, Hamilton, Ontario, Canada
Christopher S. Simpson, MD
Department of Medicine, Queen’s University, Kingston, Ontario, Canada
Shubhayan Sanatani, MD
Children’s Heart Centre, BC Children’s Hospital, Vancouver, British Columbia, Canada
Christian Steinberg, MD
Institut Universitaire de Cardiologie et Pneumologie de Québec, Laval University, Québec City, Québec, Canada
Ciorsti MacIntyre, MD
Division of Cardiology, QEII Health Sciences Center, Halifax, Nova Scotia, Canada
Paul Angaran, MD
St Michael’s Hospital, University of Toronto, Toronto, Ontario, Canada
Henry Duff, MD
Libin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada
Robert Hamilton, MD
Division of Cardiology, The Hospital for Sick Children (SickKids), Toronto, Ontario, Canada
Laura Arbour, MD
Division of Medical Genetics, Island Health, Victoria, British Columbia, Canada
Richard Leather, MD
Royal Jubilee Hospital, Victoria, British Columbia, Canada
Colette Seifer, MD
Section of Cardiology, Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada
Anne Fournier, MD
Division of Pediatric Cardiology, CHU Sainte-Justine, Université de Montréal, Montreal, Québec, Canada
Joseph Atallah, MD
Division of Pediatric Cardiology, University of Alberta Stollery Children’s Hospital, Edmonton, Alberta, Canada
Shane Kimber, MD
Division of Cardiology, Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
Bhavanesh Makanjee, MD
Heart Health Institute, Scarborough Health Network, Scarborough, Ontario, Canada
Wael Alqarawi, MD
Heart Institute, University of Ottawa, Ottawa, Ontario, Canada
Julia Cadrin-Tourigny, MD
Cardiovascular Genetics Center, Montreal Heart Institute, Montreal, Québec, Canada; Department of Medicine, Université de Montréal, Montreal, Québec, Canada
Jacqueline Joza, MD
Division of Cardiology, McGill University Health Centre, Montreal, Québec, Canada
Jimmy McKinney, MD
Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
Stephanie Clarke, MSc, CGC, CCGC
Shared Health Genetics & Metabolism Program, University of Manitoba, Winnipeg, Manitoba, Canada
Zachary W.M. Laksman, MD
Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
Karen Gibbs, RN, CCRP
Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
Vuk Vuksanovic, PhD
Q-Statistic, Toronto, Ontario, Canada
Martin Gardner, MD
Division of Cardiology, QEII Health Sciences Center, Halifax, Nova Scotia, Canada
Mario Talajic, MD
Cardiovascular Genetics Center, Montreal Heart Institute, Montreal, Québec, Canada; Department of Medicine, Université de Montréal, Montreal, Québec, Canada
Andrew D. Krahn, MD
Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada; Corresponding author: Dr Andrew D. Krahn, Inherited Heart Rhythm Research, St Paul’s Hospital, 220-1033 Davie St, Vancouver, British Columbia V6E 1M7, Canada. Tel.: +1-604-682-2344 ext 66863.
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 data set 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 5 years. The capacity to enable knowledge translation of research findings is built into HiRO’s organizational infrastructure, with 3 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 a better understanding, detection, and clinical care of those living with inherited heart rhythm and cardiomyopathy conditions and ultimately to prevent sudden cardiac death. Résumé: Contexte: La Hearts in Rhythm Organization (HiRO) est une équipe d’experts canadiens en matière de rythmes cardiaques et de cardiomyopathies héréditaires, de conseillers en génétique, d’infirmières, de chercheurs, de patients et de familles qui se consacrent à la détection des arythmies et des cardiomyopathies héréditaires, à la mise en place des meilleures thérapies et à la protection contre la tragédie que représente une mort subite d’origine cardiaque. Méthodes: Récemment, les registres existants relatifs à des maladies spécifiques ont été fusionnés en un registre national élargi de l’HiRO, créant ainsi un ensemble de données commun unique à destination des patients et leurs familles, atteints de maladies héréditaires, qui sont à risque de mort subite au Canada. Les patients admissibles sont invités à s’associer au registre et à la biobanque facultative regroupant 20 cliniques spécialisées en cardiogénétique au Canada. Résultats: Actuellement, 4 700 participants sont inscrits au registre national de l’HiRO, avec une moyenne de 593 participants inscrits chaque année au cours des cinq dernières années. La capacité à favoriser l’application des connaissances issues de la recherche fait partie de la structure organisationnelle de l’HiRO, avec trois groupes de travail supplémentaires (comité des soins cliniques de l’HiRO, comité des communautés cctives de l’HiRO et comité du symposium annuel de l’HiRO), soutenant les objectifs et les priorités actuels de l’organisation tels qu’ils ont été fixés en partenariat avec les patients. Conclusion: Le registre national de l’HiRO vise à devenir une plateforme de recherche intégrée au sein de laquelle les chercheurs peuvent exposer des questions de recherche inédites permettant de mieux comprendre, détecter et soigner les personnes atteintes de troubles du rythme cardiaque et de cardiomyopathie héréditaires et, à terme, de prévenir la mort subite d’origine cardiaque.
