Heart disease patients join forces to shape future research

NCT ID NCT06469918

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study creates a registry for 500 people with congenital heart disease (CHD) and their caregivers. Participants share their medical history to help researchers understand the disease better and design future clinical trials. Unlike a typical registry, members will actively guide which studies happen next.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this registry could help design better clinical trials and treatments tailored to the needs of people with congenital heart disease.

What could go wrong

This is an observational registry, not a treatment trial. It will not directly improve health and may not lead to new therapies for years.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

congenital heart disease hypoplastic left heart syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • HeartWorks, Inc.

    RECRUITING

    Rochester, Minnesota, 55901, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••