Davies Brianna, Roberts Jason D, Tadros Rafik, Green Martin S, Healey Jeffrey S, Simpson Christopher S, Sanatani Shubhayan, Steinberg Christian, MacIntyre Ciorsti, Angaran Paul, Duff Henry, Hamilton Robert, Arbour Laura, Leather Richard, Seifer Colette, Fournier Anne, Atallah Joseph, Kimber Shane, Makanjee Bhavanesh, Alqarawi Wael, Cadrin-Tourigny Julia, Joza Jacqueline, McKinney Jimmy, Clarke Stephanie, Laksman Zachary W M, Gibbs Karen, Vuksanovic Vuk, Gardner Martin, Talajic Mario, Krahn Andrew D
Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Section of Cardiac Electrophysiology, Division of Cardiology, Department of Medicine, Western University, London, Ontario, Canada.
CJC Open. 2020 May 29;2(6):652-662. doi: 10.1016/j.cjco.2020.05.006. eCollection 2020 Nov.
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.
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.
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.
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.
心律组织心脏研究（HiRO）团队由加拿大遗传性心律和心肌病专家、遗传咨询师、护士、研究人员、患者及其家属组成，致力于遗传性心律失常和心肌病的检测、提供最佳治疗方案，并预防心源性猝死悲剧的发生。
最近，现有的特定疾病登记库已合并到扩展后的国家HiRO登记库中，为加拿大患有遗传性疾病且有猝死风险的患者及其家属创建了一个统一的通用数据集。符合条件的患者受邀参与加拿大20家专业心脏遗传学诊所的登记库及可选生物样本库。
目前，有4700名参与者登记加入了国家HiRO登记库，在过去5年中，平均每年有593名参与者登记。HiRO的组织架构中具备将研究结果转化为实际应用的能力，另外还有3个工作组（HiRO临床护理委员会、HiRO活跃社区委员会和HiRO年度研讨会委员会），支持该组织与患者合作伙伴共同设定的当前目标和优先事项。
国家HiRO登记库旨在成为一个综合研究平台，研究人员可以在此提出新的研究问题，从而更好地理解、检测和临床护理患有遗传性心律和心肌病的患者，并最终预防心源性猝死。
