Observational Study to Describe Health-Related Quality of Life and Disease Burden Among Patients With Long QT Syndrome (LQTS) 2 and 3
This is a cross-sectional observational study designed to assess the disease burden and quality of life in individuals with LQTS 2 and 3. Each participant will answer each patient-reported outcome questionnaire only once over a 6-month period. The study will enroll up to 200 participants.
• The participant is willing and provides written informed consent to participate in this study.
• Male or female participant of at least 18 years of age, English-speaking.
• Confirmed genetic diagnosis of LQT2 or 3, demonstrated by one of the following:
‣ Genetic testing report (pathogenic or likely pathogenic (P/LP) mutation) in KCHN2 or SCN5a genes) or,
⁃ A signed physician's letter confirming genetic diagnosis of LQTS 2 or 3.
• Documented QTc ≥ 480 ms within the last year, demonstrated by one of the following:
‣ 12-lead electrocardiogram (ECG), or
⁃ A signed physician's letter confirming an ECG demonstrating QTc value ≥ 480 ms.
• The participant is able to operate a smartphone and a companion watch. \*The number of participants with QTc between 480 and 500 ms will be limited to 50.