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Viral Transgene Expression in Rodent Hearts and the Assessment of Cardiac Arrhythmia Risk
Published on: July 27, 2022
The Hearts in Rhythm Organization: A Canadian National Cardiogenetics Network
Brianna Davies1, Jason D Roberts2, Rafik Tadros3,4
1Division of Cardiology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Insights
The National HiRO Registry unites Canadian experts and patients to detect inherited heart conditions and prevent sudden cardiac death. This integrated platform supports research for better understanding and care of these at-risk individuals.
Area of Science:
- Cardiology
- Genetics
- Public Health
Background:
- The Hearts in Rhythm Organization (HiRO) comprises Canadian experts, genetic counselors, nurses, researchers, patients, and families focused on inherited arrhythmias and cardiomyopathies.
- HiRO is dedicated to detecting these conditions, providing optimal therapies, and preventing sudden cardiac arrest.
Purpose of the Study:
- To establish an integrated research platform for studying inherited heart rhythm and cardiomyopathy conditions.
- To facilitate novel research questions aimed at improving the understanding, detection, and clinical care of affected individuals.
- To ultimately prevent sudden cardiac death in patients with inherited heart conditions.
Main Methods:
- Merging existing disease-specific registries into the expanded National HiRO Registry.
- Creating a unified dataset for patients and families with inherited conditions posing a risk for sudden death in Canada.
- Inviting eligible patients from 20 specialized cardiogenetics clinics across Canada to participate in the registry and optional biobank.
Main Results:
- Currently, 4700 participants are enrolled in the National HiRO Registry.
- An average of 593 participants have been enrolled annually over the past 5 years.
- HiRO's infrastructure includes working groups supporting organizational goals, developed with patient partners, to enable knowledge translation.
Conclusions:
- The National HiRO Registry serves as a crucial integrated research platform.
- It enables researchers to investigate inherited heart conditions, leading to enhanced understanding and detection.
- The ultimate goal is to improve clinical care and prevent sudden cardiac death in individuals with these conditions.
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.
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