Canadian Centre for Rare Cardiac Conditions

The Canadian Centre for Rare Cardiac Conditions (CCRCC) at the University of Ottawa Heart Institute (UOHI) is an international centre of excellence specializing in team-based care for patients living with rare cardiac conditions and their families.

Rare diseases or conditions occur in less than five out of 10,000 people and over 7,000 have been identified. A rare cardiac condition may decrease a person’s quality of life and can even be life-threatening. However, many innovative and effective treatments have emerged in the last decade.

While doctors are well-trained, many lack the experience to correctly identify, diagnose, and treat patients with rare cardiac conditions. The CCRCC at the UOHI plays a crucial role in improving the health and outcomes of these patients.

The CCRCC is the vital hub that connects individuals with rare cardiac conditions to the specialized clinics at the Heart Institute for evaluation, diagnosis, treatment and rehabilitation. The centre plays a pivotal role in ensuring patients receive the necessary care and support tailored to their unique conditions. By acting as a centralized point of contact, the CCRCC streamlines the process of identifying appropriate specialized clinics and facilitating timely appointments with trained experts. This comprehensive approach ensures that individuals with rare cardiac conditions have access to the latest therapies and treatments available, enabling them to receive the best possible care.

The Rare Cardiac Conditions Conference

The Rare Cardiac Conditions Conference invites healthcare professionals, researchers, and policymakers to learn about the challenges and opportunities in understanding and treating rare cardiac conditions. This one-day, virtual event features multidisciplinary speakers presenting various topics related to rare cardiac conditions. The second annual Rare Cardiac Conditions Conference is scheduled to coincide with Rare Disease Day, which will take place on Thursday, February 29th, 2024.

Research

Research led by the CCRCC is critical to improving the understanding and treatment of rare cardiac conditions. There are many opportunities for patients to participate. To learn about or participate in the Canadian Registry for Amyloidosis Research or the Cardiac Sarcoidosis Randomized Trial, or any other opportunities, please contact the CCRCC.

Our clinics and programs

  • The Adult Congenital Heart Clinic: The Adult Congenital Heart Clinic at the UOHI specializes in the ongoing care and treatment of adult patients with congenital heart defects. The clinic works closely with the Children’s Hospital of Eastern Ontario (CHEO). Several CHEO pediatric specialists are members of our clinic staff.
  • The Aortic Clinic: The Aortic Clinic is a multidisciplinary clinic that brings together a cardiac surgeon, a cardiologist and a registered nurse to provide comprehensive care to patients diagnosed with aortic diseases. These are complex illnesses that must be continually monitored.
  • The Cardiac Amyloidosis Clinic:  The Cardiac Amyloidosis Clinic sees patients with confirmed or suspected cardiac amyloidosis. The clinic works collaboratively with medical genetics at CHEO and with other physician specialists in hematology and neurology. Services include advanced cardiac imaging for accurate diagnosis and disease monitoring in addition to specialized treatments for amyloidosis.
  • The Cardiac Neuromuscular Clinic: The Cardiac Neuromuscular Clinic at the UOHI specializes in the ongoing cardiac care and treatment of adult patients with neuromuscular disorders, as these patients may also experience heart disease. The clinic works closely with the Ottawa Neuromuscular Centre at The Ottawa Hospital and with CHEO. 
  • The Cardiac Sarcoidosis Clinic: The Cardiac Sarcoidosis Clinic sees patients who are referred by their physician after a cardiac sarcoidosis diagnostic for treatment and follow-up.
  • The Inherited Arrhythmia Clinic: The Inherited Arrhythmia Clinic provides expertise in the diagnosis and management of inherited arrhythmias. Services include expert clinical evaluation, cardiac testing and genetic counselling and testing. The goal of the clinic is to accurately identify hereditary arrhythmias and offer education, surveillance and medical management.

The UOHI is continually adding specialized clinics to address the needs of patients with rare cardiac conditions. If you are a doctor or patient and you believe you have identified an opportunity for a rare cardiac condition we have missed, please send us a message.

Visiting the CCRCC: What to expect

Our clinic staff will reach out to you if you have been referred to the Canadian Centre for Rare Cardiac Conditions. If you are interested in participating in a research program, please contact the CCRCC.

Additional patient resources

  • The Canadian Institutes of Health Research Rare Disease Research Initiative funds rare disease research in Canada, supporting the establishment of a robust national rare disease clinical trials network as well as preclinical and implementation research. The aim is to increase collaboration across the rare disease community and improve the lives of patients living with rare diseases and their families.
  • The Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
  • The Genetic and Rare Diseases (GARD) Information Center is a public health resource aiming to support people living with a rare disease and their caregivers by providing access to easy-to-understand information that is free and reliable.