Patients & Families
Patients
& Families
About Brugada Syndrome
What is Brugada Syndrome?
Brugada Syndrome is a condition that affects the heart and can cause problems with the way it beats. Imagine your heart as a pump that sends blood all around your body, providing it with oxygen and nutrients it needs to function properly. Normally, the heart beats in a regular pattern, but in people with Brugada Syndrome the heart beat may be disrupted with very fast and irregular rhythms.
How Does Brugada Syndrome Affect You?
The Electrical System: Your heart has an electrical system that controls its rhythm. In Brugada Syndrome, there can be glitches in this system, causing the heart to beat too fast or too slow.
Risk of Sudden Problems: People with Brugada Syndrome have a higher risk of sudden heart problems, like irregular heartbeats, syncope or even sudden cardiac arrest. This means that sometimes the heart can stop beating suddenly, which can be very serious and even life-threatening.
Symptoms May Vary: Some people with Brugada Syndrome don't have any symptoms at all, while others may experience fainting, dizziness, or even seizures. It's important to remember that not everyone with Brugada Syndrome will have the same symptoms or severity.
How is Brugada Syndrome Diagnosed?
Brugada Syndrome is usually diagnosed through special tests, like an electrocardiogram (ECG) or a genetic test. These tests help doctors see if there are any irregularities in your heart's rhythm or if there are specific gene changes related to Brugada Syndrome.
Treatment and Management
While there is no cure for Brugada Syndrome, there are ways to manage and reduce the risk of complications. Treatment may include medications to control the heart's rhythm, and in some cases, a device called an implantable cardioverter-defibrillator (ICD) may be implanted to help regulate the heart's rhythm and prevent sudden cardiac arrest.
Living with Brugada Syndrome
Living with Brugada Syndrome means taking certain precautions to keep your heart healthy and reduce the risk of problems. It's important to follow your doctor's recommendations, take prescribed medications regularly, avoid triggers that may worsen symptoms (such as certain medications or extreme temperatures), and be aware of any changes in your body or symptoms you may experience.
Link to brugadadrugs.org.
Conclusion
Brugada Syndrome can be a serious condition, but with proper management and care, most people with BrS can live a full and active life. It's important to work closely with your healthcare team, stay informed about your condition, and take steps to protect your heart health. Remember, you're not alone in this journey. There are resources, support groups, and healthcare professionals who are here to help you navigate through living with Brugada Syndrome.
Our Approach to Research
Pediatric Brugada Syndrome
The Pediatric Brugada Registry is like a big team effort to help kids with Brugada Syndrome.
By sharing information and working together, doctors and researchers can make a big difference in the lives of children and families affected by this condition.
It's all about making sure every child gets the best care possible.
Pediatric Brugada Registry: What It's About?
The Pediatric Brugada Registry is like a big book where doctors and researchers keep important information about children who have Brugada Syndrome. Here's what you need to know about it
What It Does?
Collects Information: The registry gathers details about children and families who have been diagnosed with Brugada Syndrome. This includes things like their age, symptoms they may have, and how their hearts are doing.
Helps Doctors Understand
By putting all this information together, doctors can better understand Brugada Syndrome in children. They can see patterns and learn more about how it affects different kids.
Improves Care
The registry helps doctors and researchers find better ways to take care of children with Brugada Syndrome. They can learn which treatments work best and how to keep kids with Brugada Syndrome healthy
How It Works
Sharing Information: Hospitals and doctors from different places of the world share information about children with Brugada Syndrome. This helps create a big picture of the condition and how it affects kids around the world.
Why It's Important
Better Treatment: By studying lots of cases, doctors can find new treatments or ways to manage Brugada Syndrome in children. This means kids can get better care and have a higher chance of staying healthy.
Supports Families
Families of children with Brugada Syndrome can feel supported knowing that doctors and researchers are working hard to understand and improve care for their loved ones.
Building Knowledge
Every child added to the registry helps build knowledge about Brugada Syndrome. This means that future generations of children might have even better treatments and care because of what's learned from the registry.
Our Approach: Advancing
Pediatric Brugada Syndrome Research
Brugada syndrome is a rare inherited cardiac condition that typically presents in adulthood but can, in very rare cases, manifest in childhood. The reasons for this early onset are not well understood.
Through the Pediatric Brugada Registry, we aim to better understand why some children develop symptoms early, to provide them and their families with optimal care and protection.
Registry Process
Specific Questions regarding the
Pediatric Brugada Registry
Dr. Gonzalez Corcia, a specialist in heart rhythm disorders in children, at CHU Sainte-Justine in Montréal, Canada, is the principal investigator leading this study. She and other specialists from around the world have collaborated to design this study.
Your or your child’s participation is voluntary. You have the right to refuse to participate in this study. If you/your child decide to participate, you can choose to withdraw from the study at any time without any negative consequences to the medical care, education, or other services to which you/your child are entitled or are presently receiving.
The information collected in this study aims to improve our understanding of Brugada syndrome in childhood. This knowledge will help specialists worldwide design the best and safest care for children with this condition in the future.
This study is designed to collect information on children and adolescents with Brugada syndrome. Currently, doctors worldwide manage young patients with Brugada syndrome in various ways. The study aims to collect data on how patients are diagnosed, monitored, and treated for the disease.
By collecting this information, we aim to improve our understanding of Brugada syndrome in childhood. This knowledge will assist specialists worldwide in designing the best and safest care for young patients with Brugada syndrome in the future.
You or your child are able to participate in this study if you or your child:
- Have an established diagnosis of Brugada syndrome
- Have less than 20 years of age at the time of diagnosis
By giving consent, the study team will collect information about your symptoms and electrical conduction of the heart for the registry. We will follow you up to see how you are doing for the first 5 years after you enter the registry. You will not have any special tests or procedures as part of this study.
We will collect information on a yearly basis. Providing your information for the purpose of this research study is voluntary and you have the right to refuse participation at any time.
Every effort will be made to keep the personal medical information confidential. You or your child will be assigned a unique study number for confidentiality. This number will be used on all research-related information. Your identity will remain confidential, and information containing personal details will be kept only with your local treating physician and local research team.
This study will not cost you anything because it only collects information from your usual medical care. You will not be compensated for your participation in this research study.
If you have any questions or need more information about this study, please contact the study coordination team.
NOW OPEN
Self-Enrolment
If your centre or healthcare provider is not currently participating in the registry, you and your family may still be able to join through self-enrolment.
Now that this pathway has full ethics approval, here is how it works:
1. Get in touch.
Reach out to us through the self-enrolment form on this website to let us know you're interested in joining the registry.
2. We'll guide you through it.
A member of our research team at CHU Sainte-Justine will contact you to explain the study, confirm the Brugada syndrome diagnosis, and send you a secure link to complete your consent form electronically.
3. A short virtual appointment.
Once consent is signed, we'll schedule a virtual meeting with you. You're welcome to invite your treating physician to join and share relevant medical history. If your physician isn't available to join, you can request a copy of your medical records ahead of time — we've prepared a short letter you can download and give to your doctor to make this easier.
4. Your data, safely stored.
During or after the appointment, our team will enter the relevant, de-identified medical information into our secure REDCap® research database. If you have any questions at any point, please don't hesitate to contact us — we're here to help.
NOW ENROLLING
Genetic Testing
Sub-study
We are running a dedicated sub-study to identify genetic modifiers of early and severe Brugada syndrome. Thanks to secured funding, we can now offer whole genome sequencing, free of charge, to a limited number of severely affected patients together with both of their biological parents (a “trio”).
Who is eligible?
Patients who, before the age of 20, experienced sudden cardiac death (resuscitated), aborted sudden cardiac death, documented ventricular fibrillation or haemodynamically unstable ventricular tachycardia, or an appropriate ICD shock for a life-threatening arrhythmia — together with both biological parents available for testing.
How does it work?
This project runs through self-enrolment, so we can organise sample collection directly with your family, wherever you are. We ask for a blood sample from the patient and both parents; if blood sampling isn't possible, a saliva sample is also accepted. Your local hospital or clinic can help facilitate the collection, with support and instructions provided by our team.
Interested?
Please contact us to confirm eligibility and receive the consent form and sample collection instructions.