Inherited Arrhythmia and Genetic Cardiomyopathy Clinic

The Inherited Arrhythmia and Genetic Cardiomyopathy Clinic (IAGCC) at the University of Ottawa Heart Institute provides specialized care for individuals and families affected by inherited heart rhythm disorders and genetic cardiomyopathies. Our goal is to prevent sudden cardiac events, support early diagnosis, and provide lifelong, coordinated care through a compassionate, multidisciplinary team.

Inherited arrhythmia conditions can be diagnosed at any age and have a wide range of severity. Our clinic provides assessment and ongoing care for patients with, or at risk of, the following inherited cardiac conditions:

• Long QT Syndrome (LQTS)
• Brugada Syndrome
• Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)
• Unexplained Sudden Cardiac Arrest / Idiopathic Ventricular Fibrillation (IVF)
• Arrhythmogenic Cardiomyopathy (ACM), including Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)
• Short QT Syndrome (SQTS)
• Genetic Dilated Cardiomyopathy with arrhythmic risk (e.g., LMNA, DSP, FLNC, PLN)
   

What to expect

Your first appointment typically lasts 1.5 to 2 hours. This allows time for a thorough evaluation, testing, and discussion. Follow-up appointments are usually 30-45 minutes.

During your appointment, your doctor will conduct a detailed review of your personal medical history, symptoms, and family history. Depending on your condition, you may undergo several tests before, during or after your appointment.  Commonly used tests include an exercise treadmill test, Holter monitoring, an ECG, and an echocardiogram. Your physician will explain your diagnosis, discuss the implications, and outline treatment options.

We encourage you to ask questions at any time during your appointment. Understanding your condition and treatment plan is essential for your care. Consider bringing a family member or friend for support and to help remember information discussed.

Referring Patients

Patients may be referred to the Inherited Arrhythmia & Genetic Cardiomyopathy Clinic if they have, or are suspected to have, a genetic heart rhythm or cardiomyopathy condition that may increase the risk of serious arrhythmias or sudden cardiac death.

Referral criteria for physicians and healthcare providers

The Inherited Arrhythmia & Genetic Cardiomyopathy Clinic sees patients by referral from a physician only. Referral is recommended for patients with suspected or confirmed inherited arrhythmic or cardiomyopathic conditions, or when diagnostic uncertainty remains after initial evaluation.

• Survived sudden cardiac arrest (SCA) or ventricular fibrillation not explained by ischemic or structural heart disease
• Unexplained syncope, particularly if exercise-related, stress-induced, or recurrent
• Abnormal ECG findings, including prolonged QT interval, Brugada pattern, or ventricular ectopy
• Suspected inherited arrhythmia syndromes such as LQTS, Brugada syndrome, or CPVT
• Suspected or confirmed arrhythmogenic cardiomyopathy (ARVC/ACM), including exercise-related arrhythmias
• Unexplained cardiomyopathy with arrhythmic features
• Young patients with ICD implantation or unclear etiology
• Patients with positive, uncertain, or incidental cardiac genetic test findings
• First-degree relatives of patients with inherited arrhythmia, cardiomyopathy, or sudden unexplained death
• Families requiring cascade screening, risk stratification, or longitudinal surveillance
• Post-mortem or registry-based referrals related to sudden unexplained death or cardiac arrest

When referring, please include background information such as: patient demographics, medical history/reason for referral, and test reports (echo, treadmill, ECGs). Please fax referrals to 613-696-7183.

Once your referral has been received and reviewed, you will be contacted when an appointment becomes available. Current wait times for a new consultation are approximately 12–18 months, depending on urgency and clinic availability.

For non-urgent inquiries or updates to your contact information while waiting, please contact:

Kristen Runge, RN, BScN, MN.
613-696-7000 ext. 14235

Patient Resources

Please see the following page for information on preparing for your clinic appointment.

• Coming for a Clinic Appointment

Living with an inherited heart condition can affect not only physical health, but also emotional well-being and family life. Genetic counseling is a service to help you understand a genetic conditions and test results. If genetic counseling is recommended (e.g., after genetic testing), the clinic team will discuss referral options and next steps with you.

The following organizations offer education, advocacy, and peer support for patients and families.

• Hearts in Rhythm Organization (HiRO): A Canadian network of clinicians and researchers working together to improve the diagnosis, treatment, and prevention of inherited heart rhythm conditions.
• Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation: A national organization dedicated to saving the lives of children, youth, and adults from sudden cardiac death due to preventable heart rhythm disorders.
• Arrhythmia Alliance Canada: A coalition of charities, patients, caregivers, clinicians, and allied professionals united to enhance awareness, education, and care for those living with arrhythmias.
• UpBeat by Heart Rhythm Society: A resource center providing patient education about heart rhythm disorders, treatment options, and living with arrhythmias.

Research

The Inherited Arrhythmia and Genetic Cardiomyopathy Clinic is part of the Hearts in Rhythm Organization (HiRO), a Canadian network of specialized clinics dedicated to improving care for patients with inherited heart rhythm disorders. Through HiRO, we participate in collaborative research registries and studies that help advance our understanding of these conditions.

By joining research registries and studies, patients contribute valuable information that helps improve care. Your participation can make a real difference for future patients and families living with inherited arrhythmias. Our team will discuss research opportunities with you during your clinic visits.