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CPVT Registry for Kids 5-18

Quick Facts 

📌 Studying: how CPVT affects children’s daily lives and how we can improve care for young patients.

đź“Ś Condition: CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia)

đź“Ś Ages: 0-18

đź“Ś Sites: Vancouver, BC

đź“Ś Status: Now Enrolling


About the CPVT Registry

The International Pediatric CPVT Registry is a large pool of data that gathers information about CPVT in children. Since CPVT is so rare, it is useful to have a centralized place where researchers can gather data from patients around the world. By combining data across many hospitals and countries, we can better
understand how CPVT presents, how it changes over time, and how different treatments work. Our registry collects information longitudinally, meaning we follow patients over time. This allows us to see how CPVT affects children as they grow, track outcomes, and identify patterns that can help improve diagnosis, management, and long-term care for families affected by CPVT.

What will happen in this study?

Participants’ health data will be shared with the coordinating site at the time of study enrolment, and at subsequent appointments. All data will be de identified, meaning that all identifying information will be removed so that the data cannot be traced back to participants. Data will be stored securely.

What is required of participants?

Participants will not need to do anything for this study other than consent to participate. Depending on participants’ age, a parent may also need to provide consent.

Who can join?

Any patient aged 19 or younger who has received a diagnosis of CPVT. First-degree relatives of CPVT patients are also invited to participate.

Previous Studies:

  1. Physical Activity in CPVT – is there a link between physical activity and abnormal heart rhythms in young people with CPVT?
  2. ICD and Quality of Life in CPVT – how does living with an implantable cardioverter defibrillator (ICD) affect quality of life for young people with CPVT?

These studies are closed to enrolment and are being written up. If you have any questions about them, please reach out at [email protected].

Future Studies:

  1. CPVT and the Brain – how does the brain affect the heart in children with CPVT?
Ask a Question About Research

Have a question? We can help you understand research options, requirements, and genetic testing – without any expectation that you enroll in this study. Reach out to learn about research and next steps from the SADS Foundation’s clinical trial support team.Â