Inherited Arrhythmias Studies

CPVT international registry and biobank
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). 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)

Long QT registry & biobank 
This study will collect health information about LQTS in order to identify low risk patients that don’t require beta blockers (a type of medication) and high-risk ones that do. Optionally, participants may provide a blood sample used for further research.

  • Who can participate?
    People with long QT syndrome and their first-degree relatives (biological mother, father, full siblings, and children)

ALICIA: Activity Levels IChildren with Inherited Arrhythmias
This questionnaire study aims to gather information about the amount and types of physical activities that children with inherited arrhythmias participate in. This will help doctors and researchers better understand physical activity patterns in these patients, and allow doctors to better prescribe physical activity recommendations.

  • Who can participate?
    Boys and girls 11-18 years old with an inherited arrhythmia, who have no restrictions on their physical activity and are able to fill out a questionnaire

Psychological Impact of Inherited Arrhythmias on Pediatric Patients and Their Parents
This study aims to understand how inherited arrhythmias (conditions passed through the family affecting the electrical components of the heart) affect patients and their families. This study uses questionnaires and interviews. It will help doctors better understand the psychological health of patients with an inherited arrhythmia and their families, and guide improvements to their care.

  • Who can participate?
    Boys and Girls younger than 19 years old who have recently been diagnosed with an inherited arrhythmia or who have been living with an inherited arrhythmia for some time

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).