About the Study

What is the myQTwave study?

MyQTwave is a non-interventional research study that collects information from people living with Long QT Syndrome (LQTS) Type 2 or Type 3. The goal is to better understand the daily experiences, symptoms, and health challenges faced by those with LQT2 and LQT3.

What does “non-interventional” mean?

This means you will not receive any experimental treatment, medications, or changes to your medical care. The study only involves surveys, self-reported information, and ECG recordings using a smartwatch. These ECG recordings are for research purposes only and are not validated for clinical use.

Why is this study important?

By sharing your experiences, you’re helping researchers:

• Understand how LQTS affects people outside of clinic visits

• Identify patterns in symptoms, treatment use, and quality of life

• Design better future studies and support services for the LQTS community

Who is sponsoring this study?

The study is sponsored by Thryv Therapeutics Inc., a biotechnology company focused on developing investigational treatments for cardiac conditions, including Long QT Syndrome.

Eligibility & Enrollment

Who can participate?

You may be eligible if:

• You have been diagnosed with Long QT Syndrome (LQTS) Type 2 or Type 3

• You are 18 years of age or older

• You are currently living in the United States

• You are able and willing to use a smartphone and wearable device

I have LQT1 — why can’t I join the study right now?

While the current phase of the myQTwave study focuses on specific subtypes of Long QT Syndrome, we recognize the importance of including those with LQT1 in future research. You’re not eligible at this time, but that may change as the study expands. Stay connected and follow us on Instagram for the latest updates and future opportunities to get involved.

Is there a limit to how many people can join the study?

Yes, enrollment is currently limited. If the study is full when you sign up, you’ll be placed on a waitlist and notified if space becomes available or when the study expands.

Participation Details

What will I need to do if I participate?

You will be asked to:

• Complete a short virtual consent process

• Complete brief lifestyle and symptom surveys via the myQTwave app

• Track physical and emotional symptoms using the myQTwave app

• Record ECGs using Apple Watch (if aged 22+)

Why is ECG recording limited to participants aged 22 and older when the study accepts participants 18 and older?

This is based on Apple’s ECG app regulatory approval, which only permits use for ages 22 and older. Participants aged 18–21 can still participate fully in surveys and other activities.

How long does participation last?

Participation lasts approximately 6 months, with short monthly surveys. After 6 months, you may be invited to continue for an optional 3-month extension, for a total of up to 9 months.

How much time will the study take?

The time commitment is minimal. Required monthly surveys take 5–10 minutes, and optional symptom logs take about 30 seconds each. There is no weekly time requirement, and all activities can be completed at your convenience! On average, participants spend less than 20 minutes per month on the study, though the total time may vary based on how often you choose to engage.

Will I need to travel or visit a clinic?

No. myQTwave is a completely remote study. Everything is done online or through the app from the comfort of your home.

Can I stop participating if I change my mind?

Yes. Participation is voluntary, and you can withdraw from the study at any time without any impact on your current medical care.

Technology & Devices

I don’t have an iPhone — can I still participate?

Yes! Participants will receive a study-provided iPhone and Apple Watch to use for the duration of the study. No personal smartphone or smartwatch is required.

Do I get to keep the iPhone and Apple Watch?

Devices are provided for use during the study and are typically collected at the end. However, participants who complete the full study may be given the option to keep the devices.

I already have an iPhone and Apple Watch – do I still need to use the study devices?

If your personal iPhone and Apple Watch are compatible with the myQTwave app, you’re welcome to use them during the study. Study-provided devices are available for those who need them.

Privacy & Medical Care

How is my information protected?

Your data will be securely stored using a unique participant code. Only authorized members of the study team will have access to your data.

Will participating in the study change how I manage my condition?

No. Your current treatment and medical care will not change as part of this study. You should continue following your healthcare provider’s recommendations as usual.

Can I still participate if I’ve had a recent procedure or medication change?

Yes — in fact, tracking real-life changes is one of the goals of the study.

Will the study team contact my doctor or make decisions about my care?

No. The myQTwave study is observational only. We will not contact your healthcare providers or give medical advice.

Support

Do I get paid to participate?

You will not be paid to participate in this study. However, you may receive small thank-you gifts or tokens of appreciation throughout the study depending on local guidelines.

Who do I contact if I have questions?

Email the study team at coordinator@myqtwave.com or call us directly at +1 (252) 955-4157.

You can also follow us on Instagram at @myqtwave to stay up to date on study progress