Grant: Foundation Grant

Inherited heart rhythm disorders include Long QT syndrome, Brugada syndrome, arrhythmogenic right ventricular cardiomyopathy, and catecholaminergic polymorphic ventricular tachycardia. These conditions affect 150,000 Canadians and are the major cause of sudden cardiac death in the young. Early diagnosis of these disorders can provide the most effective care, including personalized exercise restriction, personalized medications and more appropriate use of implantable cardioverter defibrillators (ICDs) to regulate heart rhythms. These conditions pose a high risk for cardiac arrest and sudden death, and new methods for identifying those at risk are urgently needed. The primary goal of this research is to develop more effective methods for predicting who are at greatest risk of a serious cardiac event. To do this, we will use healthcare data collected from participants in the Hearts in Rhythm Organization (HiRO) research database. This includes inherited heart rhythm disorder patients from 19 specialized adult and pediatric clinics across Canada. Our additional goal is to create a patient-oriented research program that addresses the current and future needs of these patients, their families and their communities. In the long-term, we expect this research to result in improved screening practices to better identify at-risk patients and individualize their treatment to prevent and decrease the tragedy of sudden cardiac death. Involving patients in the research process will ensure that we are addressing issues that are most pertinent to their well-being. We envision that this will improve communication between the healthcare provider and patients, so that patients are well informed about their condition and ensuring that they can take an active role in managing their health and improve their quality of life.