Hearts in Rhythm Organization (HiRO)National Registry and Bio Bank
The Hearts in Rhythm Organization (HiRO) is a national project in Canada that aims to learn more about rare heart conditions that run in families and can sometimes lead to sudden cardiac arrest. Doctors and researchers across Canada are working together to collect health information and samples in a national registry and biobank. This helps them understand these inherited heart rhythm disorders better, improve how they are detected, and find better ways to treat them. Ultimately, the hope is to prevent sudden deaths and ensure everyone in Canada with these conditions receives excellent, consistent care.
At a glance
What is this study about?
This project, called the Hearts in Rhythm Organization (HiRO), is a major effort by doctors and researchers across Canada. They are working together to understand inherited heart rhythm disorders, which are conditions that can cause the heart to beat abnormally and, in some cases, lead to sudden cardiac arrest. These conditions often run in families.
The main idea is to collect health information and blood or tissue samples from many patients into a central database and storage facility (a 'biobank'). By looking at all this information together, researchers hope to identify common patterns and differences in people with these conditions. This will help them learn more about how these inherited disorders develop, how they affect people differently, and how they interact with our genes. The aim is to improve the way these conditions are diagnosed and treated, and ultimately, to prevent sudden deaths.
This project also focuses on making sure that everyone in Canada who has an inherited heart rhythm disorder receives the best possible care, no matter where they live. They want to ensure that new discoveries from research are quickly put into practice to help patients. By having a nationwide system, they can gather more information and involve more people in research, leading to a better understanding and better care for these important heart conditions.
Key takeaways
- This is a Canadian research project focused on inherited heart rhythm conditions.
- It aims to better understand and treat conditions that can cause sudden cardiac arrest.
- Information and samples from patients are collected in a national database and biobank.
- Participation helps scientists learn more, leading to better care for future patients.
- Your personal details are kept private and anonymised.
- You can choose to stop participating at any time.
Who may be eligible?
You might be able to take part in this registry if you are a Canadian patient being seen by a doctor for certain inherited heart rhythm conditions. This includes conditions like Long QT syndrome, Short QT syndrome, Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), Brugada syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), and Hypertrophic Cardiomyopathy (HCM). It also includes other conditions where the cause of a sudden cardiac arrest isn't immediately clear, or certain types of inherited muscle conditions affecting the heart.
If you have a close family member (like a parent, sibling, or child) who has one of these conditions, or if you are known to carry a gene change that is linked to these conditions, you might also be eligible. Even if you've sadly lost a family member to sudden cardiac death and doctors suspect an inherited heart condition was involved, their family members may be invited to participate with consent. The study is open to both adults and children across Canada.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you a Canadian patient being seen for a heart condition?
- Has a doctor mentioned an inherited heart rhythm condition or a related cardiomyopathy?
- Do you have a close family member with one of these conditions?
- Are you comfortable sharing your health information and possibly samples for research?
- Are you receiving care at a clinic involved with the HiRO project?
What does participation involve?
If you decide to take part, you would be invited to join the registry during your regular visits to a special heart clinic that is working with the HiRO project. Taking part mostly involves allowing your doctors to share your health information and possibly some biological samples (like blood or tissue) with the national registry and biobank. This information comes from the tests and appointments you already have for your heart condition.
There aren't any extra doctor visits, new medications, or follow-up appointments directly related to just being in this registry that you wouldn't have anyway for your care. It's more about collecting the information from your standard medical care to help researchers learn. The total duration of your participation would be ongoing as long as you agree to have your anonymised medical information and samples included in the database.
Potential risks and benefits
Locations (1)
- University of British Columbia/St. Paul's HospitalVerified postcodeVancouver, Canada
Common questions
What is a 'biobank'?
A biobank is like a library of biological samples (like blood or tissue) and health information. Scientists use these samples and data to learn more about diseases.
Will my personal details be shared?
No, your personal details will be kept private. The information shared for research will be anonymised, which means your name or anything that could identify you will be removed.
Do I have to live in Canada to participate?
Yes, this specific research project is for Canadian patients who are being treated at certain heart clinics across Canada.
Will I get any special treatment for joining?
No, joining this registry won't change the medical care you receive. It's about contributing your routine health information to help research.
Can my family members also join?
Yes, if your close family members (like parents, siblings, or children) also have or are suspected of having an inherited heart condition, they may also be invited to participate.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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