Registry collecting data and samples on inherited heart rhythm disorders in Canada
Gathers data and samples from people with inherited heart rhythm disorders to study sudden death.
Plain-language title generated from the registry record
Registry title: Hearts in Rhythm Organization (HiRO)National Registry and Bio Bank
Key facts
- Where
- Vancouver, CanadaSee the site
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people in Canada who are referred for heart tests because of an inherited heart rhythm condition. It also takes some relatives and families of people who died suddenly.
- Sex
- All sexes can join.
- Disease stage
- A recognized inherited heart rhythm syndrome or inherited heart muscle disease (such as Long QT syndrome, Brugada, ARVC, CPVT or hypertrophic cardiomyopathy). A probable or definite diagnosis is needed for the heart muscle diseases.
- Biomarker or test result
- Some people join as carriers of a disease-causing or likely disease-causing gene change for an inherited heart rhythm or heart muscle disease.
Main reasons for not taking part
- Cannot or will not give informed consent
- Known sarcoidosis
- Aortopathies, including Marfan Syndrome, Ehlers Danlos, Familial Thoracic Aortic Aneurysm and Dissection
- Neuromuscular disease
- Familial hypercholesterolemia
Read by machine on 12 November 2026.
Where in Canada
- University of British Columbia/St. Paul's HospitalVancouver, CanadaNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- University of British Columbia
- Trial code
- NCT04189822
- Record updated
- 3 November 2022
- Original description
The Hearts in Rhythm Organization (HiRO) is a national network of Canadian researchers/clinicians, working towards a better understanding of the rare genetic causes of sudden cardiac death (SCD).Read full original descriptionShow less
Hearts in Rhythm Organization (HiRO)National Registry and Bio Bank: Improving Detection and Treatment of Inherited Heart Rhythm Disorders to Prevent Sudden Death
The Hearts in Rhythm Organization (HiRO) is a national network of Canadian researchers/clinicians, working towards a better understanding of the rare genetic causes of sudden cardiac death (SCD).
Canadian adult and pediatric electrophysiology centres across Canada work together to gather data and bio sample in a national data registry and bio bank hoping to improve the detection and treatment of inherited heart rhythm disorders to prevent sudden death.
Inclusion: All Canadian patients referred for cardiac investigations related to inherited heart rhythm (IHR) conditions will be invited to participate if they meet the following criteria:; They understand the registry/bio bank purpose, potential risks and willingly sign consent; Recognized genetic syndromes; Long QT syndrome (LQT), Short QT Syndrome (SQT), catecholaminergic polymorphic ventricular tachycardia (CPVT), Brugada (BrS), Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), Familial Cardiac Conduction Disease (FCCD); Deceased cases of SCD, suspicious for an inherited heart rhythm condition. Included with signed consent from next of kin (NOK); IHR patients referred for risk of SCD enrolled (includes first degree and second degree relatives) SCD syndromes seen in heart rhythm clinics; Unexplained cardiac arrest (UCA), Early Repolarization (ER), Idiopathic Ventricular Fibrillation (IVF), Short Coupled IVF (SCIF), Polymorphic Ventricular Tachycardia Not Otherwise Diagnosed (PMVT, NYD), Sudden Arrhythmic Death Syndromes (SADS) that are SCD cases with negative autopsy results; Mendelian cardiomyopathies (hypertrophic cardiomyopathy (HCM), Mendelian Dilated Cardiomyopathy (DCM) including Lamin and Phosopholambin (LMNA, \& PLN), and Left Ventricular Non -Compaction (LVNC); **Must have either a probable or definite clinical diagnosis, first degree relative (FDR) with a known diagnosis, gene carrier (disease causing or likely disease causing by American College of Medical Genetics (ACMG 2015), or may be second degree relative (SDR) with inability to screen intervening relative; Carriers of a pathogenic or likely-pathogenic variant for an inherited arrhythmia or cardiomyopathy related gene, not otherwise fitting inherited or cardiomyopathy diagnostic criteria; Exclusion:; Patients referred for cardiac investigations related to inherited heart rhythm conditions will be excluded from participating if they meet the following criteria:; Unwilling or are unable to provide informed consent; Known sarcoidosis; Mitral valve Prolapse unless unexplained cardiac arrest or syncope with documented PMVT; Heart Failure/Non-Familial Dilated Cardiomyopathy DCM without a positive family history of affected FDRs or SDRs; Aortopathies including Marfan Syndrome, Ehlers Danlos, Familial Thoracic Aortic Aneurysm and Dissection; Neuromuscular disease; Familial hypercholesterolemia.