Rare cardiac conditions may not be as rare as previously thought, posing a growing concern for medical professionals.
OTTAWA, January 23, 2024 – The University of Ottawa Heart Institute (UOHI) has launched the Canadian Centre for Rare Cardiac Conditions (CCRCC), the world’s first international centre of excellence providing specialized, team-based care for affected patients and their families.
“The Canadian Centre for Rare Cardiac Conditions was established to improve patient care for people living with lesser-known heart conditions that all too often are undetected, misdiagnosed and under researched,” said Dr. Ian Paterson, a cardiologist and the director of the CCRCC. “Our goal is to increase awareness of these conditions and to improve care delivery and outcomes through integration of clinical expertise, groundbreaking research and world-class training opportunities.”
Although each condition is rare, generally occurring in less than one in every 2,000 Canadians, rare cardiac conditions are more common than most may realize. Over 7,000 rare diseases have been identified and it is estimated that one in every 12 people has one of these conditions, said Dr. Paterson. “Therefore, we likely all have a family member or close friend with a rare disease.”
While doctors are well-trained, many lack the experience to correctly identify, diagnose, and treat patients with rare cardiac conditions, said Dr. Paterson. The CCRCC at the UOHI will play a crucial role in improving the health and outcomes of these patients.
At 56, Anne McAllister developed cardiac sarcoidosis, a rare condition characterized by collections of immune cells in the heart tissue that can interfere with the heart’s normal functions. As McAllister’s heart rate fluctuated frequently – either dangerously fast or slow – doctors initially misdiagnosed the condition.
McAllister’s condition deteriorated until, after two years and numerous tests and consultations, Dr. David Birnie, a cardiac electrophysiologist at the UOHI and the institute’s head of cardiology, delivered a diagnosis of cardiac sarcoidosis. For McAllister, the diagnosis opened doors to treatment options previously unidentified. The discovery set Dr. Birnie and his colleagues on a path to publishing the world’s first guidelines for cardiac sarcoidosis diagnosis and management, and ultimately toward the forming of the CCRCC at the UOHI.
Today, the CCRCC acts as the vital hub that connects patients like Anne McAllister to 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.
“Through the Canadian Centre for Rare Cardiac Conditions, patients have access to cutting-edge expertise at the Heart Institute, which can lead to earlier diagnosis and treatment of unusual or unexplained heart problems. Patients also benefit from on-going research led by the centre that may identify new diagnostic tools and treatment options,” said Anne McAllister, now in stable condition after her initial diagnosis more than a decade ago. “I think that knowing this will give hope and confidence to patients who are diagnosed with a rare condition.”
World-class clinical care, research and education
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. Rare cardiac conditions treated at specialized clinics within the UOHI, and in collaboration with CCRCC partners across the region, include:
- Adult congenital heart disease
- Aortic disease (aortopathy)
- Cardiac amyloidosis
- Cardiac neuromuscular disorder
- Cardiac sarcoidosis
- Hypertrophic cardiomyopathy
- Inherited arrhythmias
- Pericardial disease
- Spontaneous coronary artery disease
The CCRCC also plays a vital role in raising awareness of rare cardiac conditions and in providing leadership by sharing best practices and research findings with colleagues across the medical community. The CCRCC recently launched a medical education program, which provides physician training experience at the UOHI centred on rare cardiac conditions.
“The University of Ottawa Heart Institute has long been recognized for its expertise in treating and preventing heart disease, including rare cardiac conditions,” said Dr. David Birnie. “The newly established Canadian Centre for Rare Cardiac Conditions further enhances the institution’s commitment to providing exceptional patient care, advancing scientific discoveries, and fostering education in cardiovascular care through collaboration, innovation and knowledge sharing.”
Dr. Thierry Mesana, president and CEO of the UOHI, said the Canadian Centre for Rare Cardiac Conditions is a testament to the Heart Institute’s commitment to leadership in practice and innovation. “Our initiative not only addresses a vital healthcare gap, but also advances medical knowledge through research, and prepares the next generation of healthcare professionals through unique educational opportunities only available at the University of Ottawa Heart Institute,” he said.
The Canadian Centre for Rare Cardiac Conditions will host the 2nd Annual Rare Cardiac Conditions Conference on Thursday, February 29, 2024, a date coinciding with International Rare Disease Day. The conference invites healthcare professionals, researchers, and policymakers to learn about the challenges and opportunities in understanding and treating rare cardiac conditions.
For more information
To learn more about the CCRCC, the Rare Cardiac Conditions Conference, clinical research at the UOHI and educational resources, please visit the Canadian Centre for Rare Cardiac Conditions.
To coordinate an interview, please liaise with the contact below.
Leigh B. Morris
University of Ottawa Heart Institute