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 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.
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.
ABSTRACT
Pre-participation screening of athletes to prevent sudden cardiac arrest or death is endorsed by international guidelines. Standardized histories and physical examinations are recommended to optimize effectiveness. To assess current screening practices across Canada in the university athlete population, we sought to analyze the preparticipation screening form of all universities. A comparative analysis to recommendations from the American Heart Association (AHA), European Society of Cardiology (ESC), and the Preparticipation Physical Evaluation (PPE-4) was conducted. Pre-participation forms from 30 of 56 U Sports universities were obtained. Adherence to published guidelines was highly variable. Ten percent strictly followed any of the 3 guideline recommendations, and only 43% contained at least 75% of the recommended items. Average percentage adherence to AHA and ESC guidelines was statistically significantly higher than adherence to the PPE-4 (62.2% and 66.1%, respectively, vs 52.7%, P < 0.001). Family history of common cardiac conditions predisposing athletes to sudden cardiac death and family history of sudden or unexpected death was omitted in 80% and 30% of forms, respectively. Recommendations for examining for stigmata of Marfan syndrome and assessment of femoral pulses was absent on more than 70% of forms. Although there is great controversy regarding the benefits and impact of screening, our results suggest that Canadian universities are conducting pre-participation screening although in a highly variable manner. Incomplete and variable screening questionnaires employed by Canadian universities may negatively affect the potential to identify athletes with underlying disease. We recommend that, if pre-participation screening is performed, a guideline-based questionnaire be used to optimize accuracy.
