Combining genetic counselling with clinical assessments to tackle sudden cardiac death (SCD)

“The impact of sudden cardiac death is second only to all cancers in terms of life-years lost,” says CANet investigator and professor at University of British Columbia’s Faculty of Medicine, Dr. Andrew Krahn.
He, together with fellow CANet investigator and professor at University of Toronto’s Faculty of Medicine, Dr. Robert Hamilton, is helping better diagnose and treat individuals and family members at-risk for sudden cardiac death by developing a more effective detection and prevention strategy.
The strategy, according to them, is in the genes.
The program focuses explicitly on channelopathies, and hypertrophic and arrhythmogenic cardiomyopathies – all predominant causes of SCD in young adults and children.
Each of these disorders is an inherited heart condition.
“Our current system typically discovers barely ten per cent or less of these individuals,” Dr. Krahn says.
Krahn and Hamilton have received funding with CANet’s Strategic Research Grant for their project “The Canadian Genetic Heart Rhythm Network: Innovative Strategies to Reduce the Risk of Sudden Cardiac Death Using Novel Clinical and Population Approaches” The Canadian Genetic Heart Rhythm Network is a collection of 15 centers – 12 adult and seven pediatric – across seven provinces in Canada.
Patients will work with genetic counselors and cardiac experts. Counselors will help family members understand the benefits, and risks for clinical & genetic assessment.
Patients will also be monitored for arrhythmias or other SCD-related symptoms using implanted cardiac monitors.
The CANet project will develop an “accurate, up-to-date, and reliable list of risk factors, and indicators based on information collected from questionnaires, medical data from clinical visits, and information from caregivers,” Dr. Hamilton says.
Genetic testing and clinical testing together are highly cost-effective in preventing sudden death.
New Zealand and Sweden have already combined both and can now successfully identify more than half of the estimated disease population.
Krahn and Hamilton are working with experts from both countries to help adapt the European success story to Canada.
With this project, CANet is a step closer to reaching its strategic goal of a 10 per cent drop in SCD across Canada, while significantly improving the efficiency, effectiveness, and accessibility of arrhythmia care delivery in Canada and the world.
The Krahn-Hamilton CANet project is also building a highly interactive website with educational materials, interactive multimedia, and links to social media and patient advocacy group platforms.
“We want to deliver accessible and up-to-date information to health professionals and patients,” Dr. Krahn says.
For example, he recently partnered with Heart and Stroke Foundation to create a 75-second video on sudden cardiac death research.
It was viewed more than 11,000 times in the first 24 hours.
“We are also developing communication software and apps for public awareness, to help patients take care of themselves at home,” Dr. Hamilton adds.
Both are working with commercial and industry partners such as Medtronic, AliveCor, and Systemas Genomics to develop such home health and technology platforms. This work also reflects CANet’s commitment and strategic goal of commercializing five to seven new technologies related to arrhythmia care delivery.
Aligned with CANet’s strategic goal to launch of 30-40 new experts in public and private research, Drs. Krahn and Hamilton are also creating a scientific think-tank community for students and researchers to foster communications and connections for ongoing and new projects related to SCD.
The think-tank will help in “our ability to support capacity building in the field in terms of Highly Qualified Personnel, connect graduate students, medical trainees, residents and research fellows with one another, and help with patient recruitment,” Dr. Krahn says.