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Neurologic and Cardiac Phenotype in Patients with Long QT Syndrome Type 1

Now enrolling patients with LQTS Type 1.

Quick Facts

Trial Name: Neurologic and Cardiac Phenotype in Patients for Long QT Syndrome Type 1
Run By: The University of British Columbia
Condition: Long QT syndrome type 1 (KCNQ1 gene)
Ages: 3-18 years old
Sites: Virtual in the United States and Canada
Status/Phase: Open to New Participants

About this study

LQTS1 families are invited to help researchers understand which neurodevelopmental findings are unique to CPVT and which are seen across other inherited arrhythmias. Your participation is essential to interpreting the results.

Researchers have noticed that some people with CPVT – especially those with variants in RYR2 – may also experience neurologic or neurodevelopmental challenges (like seizures, learning differences, attention challenges, or autism spectrum traits).

This study from the University of British Columbia (Principal Investigator: Dr. Shubhayan Sanatani) aims to:

❤️ Screen for neurodevelopmental disorders (NDD) in a large group of children with CPVT, and
❤️ Better understand the cardiac course of CPVT in children who may also have NDD features.

 

What are the basic eligibility criteria?

This study is for families who meet these basic criteria:

Age: 3–18 years

Diagnosis: Confirmed CPVT or LQTS1 (with or without an identified genetic variant), diagnosed at age ≤18 years.

Full eligibility will be confirmed by the research team.

Ask a question about research

Have a question? We can help you understand research options, requirements, and genetic testing – without expectation that you enroll in any particular study.

Current trial sites

This study is currently enrolling virtually throughout North America (the United States and Canada).

Neurologic and Cardiac Phenotype in Patients with Long QT Syndrome Type 1

After filling out the form below, you’ll have a chance to discuss this research study—and any questions you might have—directly with the staff at the SADS Foundation. Then a member of our team will connect you one-on-one with the research coordinator.

Your name(Required)
Address
Name of affected individual(Required)
Tell us about the person who is interested in joining the registry. If you’re completing this form for your child (or someone you care for), please enter their information.
Does the affected individual have CPVT?(Required)
Consent(Required)
I understand my information will be shared with this research study.