RecruitingNot Applicable

Observational Study to Describe Health-Related Quality of Life and Measure Disease Burden Among Patients With Long QT Syndrome Types (LQTS) 2 and 3

United States200 participantsStarted 2025-10-27

Plain-language summary

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.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion criteria

. 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:
. Documented QTc ≥ 480 ms within the last year, demonstrated by one of the following:
. 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.

Exclusion criteria

. Current participation in another clinical trial involving a drug or device.

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Quality of Life (QoL)

Timeframe: Month 1

Quality of Life (QoL)

Timeframe: Month 1

Disease burden

Timeframe: Month 2

Disease burden

Timeframe: month 2

Disease burden

Timeframe: Month 2

Illness perception

Timeframe: Month 3

Illness perception

Timeframe: Month 3

Psychosocial health, including distress, social and psychological well-being, and cardiac-specific measures,

Timeframe: Month 4

Trial details

NCT IDNCT07075445

SponsorThryv Therapeutics, Inc.

Sponsor typeINDUSTRY

Study typeOBSERVATIONAL

Primary completion2026-12-01

Contact for this trial

Study Coordinator

252-955-4157 coordinator@myqtwave.com

View on ClinicalTrials.gov More Long QT Syndrome Type 3 trials

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion criteria

. 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:
. Documented QTc ≥ 480 ms within the last year, demonstrated by one of the following:
. 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.

Exclusion criteria

. Current participation in another clinical trial involving a drug or device.

What they're measuring

Quality of Life (QoL)

Timeframe: Month 1

Quality of Life (QoL)

Timeframe: Month 1

Disease burden

Timeframe: Month 2

Disease burden

Timeframe: month 2

Disease burden

Timeframe: Month 2

Illness perception

Timeframe: Month 3

Illness perception

Timeframe: Month 3

Psychosocial health, including distress, social and psychological well-being, and cardiac-specific measures,

Timeframe: Month 4