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Thryv Therapeutics Study of People with Long QT Syndrome Types 2 and 3

         

Now enrolling patients with a confirmed genetic diagnosis in the KCNH2 or SCN5A gene. 

Quick Facts 

📌 Trial Name: myQTwave
📌 Principal Investigator: Sam Sears, PhD
📌 Trial Sponsor: Thryv Therapeutics
📌 Type of Trial: Remote research study
📌 Condition: Long QT Syndrome type 2 or type 3
📌 Ages: Adults 18+
📌 Location: Remote within the United States

About This Trial

Do you have Long QT Syndrome (LQTS) Type 2 or Type 3 (LQT2 or LQT3) with a confirmed genetic diagnosis demonstrated by a variant in the KCNH2 or SCN5A gene? 

MyQTwave is a non-interventional, observational research study enrolling adults 18 and older living with LQT2 or LQT3. This study is participant-directed, and you may inquire and enroll yourself without a referral from your doctor. MyQTwave is an app programmed with questionnaires to explore how living with LQTS impacts daily life, capturing data about both physical and emotional well-being. The myQTwave study is sponsored by Thryv Therapeutics Inc., a pharmaceutical company based in Montreal, Canada and the enrolling site is at East Carolina University, North Carolina. The Principal Investigator is Dr. Sam Sears. Participants may receive an iPhone and Apple Watch. 

What are the basic eligibility criteria?

  • Have a genetic diagnosis of LQT2 or LQT3
  • Have a documented QTc ≥ 480 ms within the past 12 months
  • Are 18 years or older
  • Currently reside in the United States
  • Are comfortable using a smartphone and wearable device

The study team will review all eligibility criteria to determine whether are eligible to enroll in the study. You will need to provide documentation of your LQT genotype and QTc from an electrocardiogram either by showing the coordinator your laboratory results or via a confirmatory letter from your healthcare provider (letter format provided as part of the study).

FAQs

What is involved for people who join?

If you take part in the myQTwave study, you will be asked to complete brief surveys on an iPhone and wear an Apple Watch – both provided to you at no cost – to track your heart activity, physical activity, sleep, and other daily measures. 

The information collected will help researchers better understand what it’s like to live with LQTS2 or LQTS3. Insights from this study may also help guide the development of future treatments for these conditions.

Can I stay on my current treatment?

Yes. This is an observational study, meaning no experimental treatments are given, and you’ll continue your regular medical care.

Do I have to travel for this study?

No. myQTwave is a fully remote outpatient study that is coordinated at East Carolina University, Greenville, North Carolina, United States, 27858. You will not need to travel to participate.

What if I change my mind about participating?

Once you enroll in the research study, you can leave the study at any time for any reason.

If you’re interested in participating:

The information contained herein is being made available as a public service by the SADS Foundation (SADS). No posted information or material provided is intended to constitute medical or professional advice. SADS makes no representations or warranties, either express or implied, as to the accuracy of any posted information and assumes no responsibility for any errors or omissions contained therein. SADS makes no representations or warranties, either express or implied, that any products or services adhere to or satisfy any standards or requirements that may be applicable to such product or service. Furthermore, no warranty, express or implied, is created by providing information and does not in any way constitute an endorsement by SADS. No one shall be entitled to claim detrimental reliance on any views or information, or to claim any duty on the part of SADS to update posted information. In no event shall SADS be held liable to you or anyone else for any decision made or action taken in reliance on such information or views.