Hypertrophic Cardiomyopathy Registry, Biobank and Imaging Data Repository
The Hearts in Rhythm Organization (HiRO) in Canada is conducting a study to learn more about hypertrophic cardiomyopathy (HCM). This condition causes the heart muscle to thicken, making it harder to pump blood. Researchers are collecting health information, genetic samples, and heart MRI/echo scans from patients with HCM and those who carry genes that put them at risk. The main goals are to understand how the disease progresses, identify signs that could predict serious problems, develop better ways to predict who might be affected, and learn more about the genetic causes of HCM. This study aims to help doctors better understand, diagnose, and treat this heart condition, ultimately improving care for people living with HCM.
At a glance
What is this study about?
Hypertrophic Cardiomyopathy (HCM) is a condition where the heart muscle becomes unusually thick. This can make it harder for the heart to pump blood effectively. This study, led by a group of Canadian heart experts called the Hearts in Rhythm Organization (HiRO), is designed to gather a lot of information about HCM. They are creating a large collection of health records, genetic samples (like from blood or saliva), and detailed heart scans from people who have HCM or are at risk of developing it because of their genes.
The main reasons for this study are to get a clearer picture of how HCM affects people over time and to find warning signs that might predict when someone's condition could worsen. Researchers also want to create better tools to predict who might develop the disease, who might have complications, and how different treatments might work for different people. Finally, they aim to understand more about the specific genetic changes that lead to HCM, both those commonly known and those yet to be fully understood.
The information collected in this study will be used to improve our understanding of HCM, which could lead to better ways for doctors to diagnose the condition earlier, predict how it might progress, and develop more effective treatments. By bringing together data from many individuals, this research hopes to make a significant difference in the lives of people affected by HCM.
Key takeaways
- The study aims to understand Hypertrophic Cardiomyopathy (HCM) better.
- It collects health information, genetic samples, and heart scans.
- Data helps predict disease progression and treatment response.
- Your privacy is protected using special codes instead of your name.
- You can withdraw from the study at any point without impacting your care.
- The findings could lead to improved diagnosis and treatment for HCM.
Who may be eligible?
This study is looking for people with hypertrophic cardiomyopathy (HCM) or those who have certain genetic changes that put them at risk for the condition. Your doctor might consider you if your heart muscle is thickened in a particular way, or if you have a close family member with HCM, or if genetic tests show you carry one of the specific genes linked to HCM. There's no age limit, so people of all ages can be considered.
However, there are some reasons why you might not be able to join. For example, if you have other specific genetic conditions, certain metabolic diseases that affect the heart, or some neurological conditions. Also, if you were diagnosed with HCM after age 65 and don't have a known genetic cause, or if you have a history of heart attack, severe high blood pressure, or some serious heart defects, you might not be eligible. They also need to be able to get good quality heart scans from you.
Ultimately, a medical professional involved with the study will review your health information to see if you fit all the necessary criteria to take part.
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.
- Do you have a diagnosis of hypertrophic cardiomyopathy (HCM)?
- Have you had a genetic test showing a gene change linked to HCM?
- Do you have a close family member with HCM?
- Do you have any other serious heart or genetic conditions that might exclude you?
- Are you able to provide clear heart scan images (like echocardiograms or MRI)?
- Are you willing to share your health information and possibly a DNA sample?
What does participation involve?
If you decide to take part in this study, a research coordinator will explain everything in detail and answer any questions you have before you sign an agreement form. You'll have plenty of time to decide.
Once you join, researchers will collect information about your health, including your medical history, any diagnostic test results you've had, genetic test results, your family's health history, and any treatments you've received. This information will be kept strictly private by removing your name and other identifying details and replacing them with a special study code.
Taking part will involve your existing medical information being shared with the study team. You might also be asked to provide a sample for DNA analysis, such as a blood test. The study will also use heart scans like echocardiograms or cardiac MRI scans. There are no special new medications or extra visits solely for the study; it mainly involves collecting and reviewing your existing health data and potentially a DNA sample. You can choose to stop participating at any time.
Potential risks and benefits
Locations (13)
- Mazankowski Alberta Heart InstituteVerified postcodeEdmonton, Canada
- UBC St. Paul's HospitalVerified postcodeVancouver, Canada
- Vancouver Island Health AuthorityVerified postcodeVictoria, Canada
- IWK Health CentreVerified postcodeHalifax, Canada
- Queen Elizabeth II Health Sciences CentreVerified postcodeHalifax, Canada
- McMaster UniversityVerified postcodeHamilton, Canada
- London Health Sciences CentreVerified postcodeLondon, Canada
- University of Ottawa Heart InstituteVerified postcodeOttawa, Canada
- Centre Hospitalier de l'Université de Montréal (CHUM)Verified postcodeMontreal, Canada
- Hôpital Ste-JustineVerified postcodeMontreal, Canada
- McGill University Health CentreVerified postcodeMontreal, Canada
- Montreal Heart InstituteVerified postcodeMontreal, Canada
Common questions
What is Hypertrophic Cardiomyopathy (HCM)?
HCM is a heart condition where the heart muscle becomes thicker than normal, making it harder for the heart to pump blood around the body.
Will I have to take new medicines?
No, this study is about collecting information and samples, not testing new medications. Your current treatments will not change.
Will this study share my personal details?
The study takes patient privacy very seriously. Your name and other identifying information will be replaced with a special code to keep your data confidential.
Do I have to live in Canada to take part?
This study is run by a Canadian research network, so patients are invited from their sites and partner centres within Canada.
Can I stop participating if I change my mind?
Yes, you are able to withdraw from the study at any time without any reason, and it won't affect your medical care.
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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