The Canadian Genetic Heart Rhythm Network: 

Innovative Strategies to Reduce the Risk of Sudden Cardiac Death using Novel Clinical and Population Approaches

The goal of the Canadian Genetic Heart Rhythm (CGHR) Network is to harness the expertise available across Canada to develop a strategy that will prevent deaths from Sudden Cardiac Death (SCD). It is a unique opportunity to connect patients and their family members, health policy decision-makers, collaborators from medical industry, and health care providers to work together to help reverse the tide of the ravaging effects of SCD.

The overall goal of the program is to engage those known to be at risk, identify new patients that are at risk, understand their values and preferences, and develop detection and prevention strategies.
Phase one of the project, is detection of at-risk individuals with unrecognized inherited channelopathies, hypertrophic and arrhythmogenic cardiomyopathy in the community through an active program to screen and identify disease in family members with these disorders. Individuals who test positive will undergo a standardized assessment that includes novel risk marker analysis coupled with lifestyle and medical/surgical intervention assesment. With consent, email-delivered patient questionnaires will be used to expand family pedigrees and obtain disease-related data for risk factor analysis. Phase two of the project will include monitoring of high risk individuals identified in phase one using an implanted cardiac monitor to identify asymptomatic non-sustained arrhythmias or symptom-related rhythms.

IMPACT:

The impact of sudden cardiac death is second only to all cancers in terms of life-years lost. Among the causes of SCD, cardiac channelopathies and hereditary cardiomyopathies are the predominant causes of SCD in young adults and children, and this contributes disproportionately to life-years lost. Although these conditions are individually rare or uncommon, when taken together it is estimated that 1 in 300 individuals are at risk.