Ontology highlight
ABSTRACT:
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.
SUBMITTER: Davies B
PROVIDER: S-EPMC7710951 | biostudies-literature | 2020 Nov
REPOSITORIES: biostudies-literature
Davies Brianna B Roberts Jason D JD Tadros Rafik R Green Martin S MS Healey Jeffrey S JS Simpson Christopher S CS Sanatani Shubhayan S Steinberg Christian C MacIntyre Ciorsti C Angaran Paul P Duff Henry H Hamilton Robert R Arbour Laura L Leather Richard R Seifer Colette C Fournier Anne A Atallah Joseph J Kimber Shane S Makanjee Bhavanesh B Alqarawi Wael W Cadrin-Tourigny Julia J Joza Jacqueline J McKinney Jimmy J Clarke Stephanie S Laksman Zachary W M ZWM Gibbs Karen K Vuksanovic Vuk V Gardner Martin M Talajic Mario M Krahn Andrew D AD
CJC open 20200529 6
<h4>Background</h4>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.<h4>Methods</h4>Recently, existing disease-specific registries were merged into the expanded National HiRO Registry, creating a single common ...[more]