The Canadian National Long QT Syndrome Registry (LQTSREG)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT02425189|
Recruitment Status : Completed
First Posted : April 23, 2015
Last Update Posted : November 16, 2020
The NLQTS Research Network team aims to build a Canadian collaboration of dedicated investigators that will create a new paradigm in the modern investigation of patients with LQTS and in the description of a new disease modifier.
The project aims to describe the natural history of familial Long QT Syndrome to identify:
- Low risk patients that do not require protective beta-blocker therapy
- High-risk patients that require protective beta-blocker therapy and may benefit from a primary prevention ICD. This cohort would contain treated pre-symptomatic individuals effectively protected from harm.
|Condition or disease|
|Long QT Syndrome|
|Study Type :||Observational [Patient Registry]|
|Actual Enrollment :||1051 participants|
|Target Follow-Up Duration:||3 Years|
|Official Title:||National Long QT Syndrome Registry: Canadian Genetic Heart Rhythm Network |Research Data Registry and Bio Bank|
|Study Start Date :||November 2014|
|Actual Primary Completion Date :||August 30, 2020|
|Actual Study Completion Date :||August 30, 2020|
LQT Positive (Group 1)
Asyptomatic Patients (Group 2)
Asymptomatic patients, those free of syncope on beta blocker, or gene negative unaffected family members
- Natural Course of Long QT [ Time Frame: Three Years ]Changes to diagnosis, medications, treatments.
Biospecimen Retention: Samples With DNA
Blood Samples drawn:
1 X 9 ml EDTA
Samples for bio banking will be stored long-term
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02425189
|Canada, British Columbia|
|University of British Columbia|
|Vancouver, British Columbia, Canada, V6E 4V7|
|Principal Investigator:||Andrew D Krahn, MD||University of British Columbia|