CPVT international pediatric registry
Health information is being collected on CPVT, a disorder which causes individuals’ hearts to beat very fast and irregularly when they are experiencing some kind of strong emotion or when they’re engaging in physical activity. This information from children and families around the world will be used to find specific signs to help doctors predict who is at risk for this heart disorder. Optionally, participants may provide a small amount of blood to be used for further research.

  • Who can participate?
    Anyone with CPVT and their first-degree relatives (biological mother, father, full siblings, and children)

BC inherited arrhythmia research program data registry
A collection of health information from patients across BC with one of the following inherited heart rhythm problems: arrhythmogenic right ventricular cardiomyopathy (ARVC), hypertrophic cardiomyopathy (HCM), long QT syndrome (LQTS), short QT syndrome (SQTS), Brugada syndrome (BrS), catecholaminergic polymorphic ventricular tachycardia (CPVT). These patients are also enrolled in the HiRO (Hearts in Rhythm Organization) registry, which includes CASPER (people who have had a sudden cardiac arrest or sudden unexpected death, as well as their first-degree family members). This information will help researchers and doctors learn more about these problems and put together better treatment plans.

  • Who can participate?
    Anyone with an inherited arrhythmia and their first-degree relatives (biological mother, father, full siblings, and children)

LIVE: Lifestyle and Exercise in Long QT Syndrome and Hypertrophic Cardiomyopathy
This study will assess the risks and benefits of different kinds of physical activity in children with Long QT syndrome (LQTS), and Hypertrophic Cardiomyopathy (HCM). This will be done through review of medical records, questionnaires and FitBit® data, over three years. This study will improve the understanding of LQTS and HCM and lead to better health care for patients with these diagnoses, especially in regards to their physical activity. BC Children’s Hospital is one of many international sites that are participating in this study.

  • Who can participate?
    Boys and girls at least 7 years old diagnosed with HCM or LQTS, and who have no restrictions on their physical activity and who can fill out a questionnaire.

Identification and Functional Characterization of Mutations Implicated in Inherited Arrhythmia Syndromes
This study aims to better understand new changes in genes (mutations) and how they contribute to inherited arrhythmia syndromes. In collaboration with leading scientists in the field, we will examine how these mutations change the function of the heart. Results will help us better understand how mutations contribute to heart rhythm disorders.

  • Who can participate?
    Anyone who has been diagnosed with or is being investigated for an inherited arrhythmia, or who is a first degree relative (parent, child, or full sibling) of someone who has been diagnosed with or is being investigated for an inherited arrhythmia

Wolff-Parkinson-White Syndrome in Children, Fischerkeller Grant Database 
Health information will be collected into a database from patients diagnosed with Wolff-Parkinson-White (WPW) syndrome – a type of heart rhythm disorder that comes from having extra electrical pathways in the heart. The goal of this database study is to provide information about outcomes and to improve the assessment of patients with WPW.

  • Who can participate?
    Anyone with a diagnosis of WPW

For more information about electrophysiology research, or if you think you or your child might be interested in participating in one of these studies, please contact the electrophysiology research team at heartbeat@cw.bc.ca or 604-875-2345 (ext. 7955).