New study tracks rare heart disease to pave way for future treatments
NCT ID NCT06214507
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study follows 60 people with Danon disease, a rare genetic heart condition, to learn how it progresses over time. Researchers will monitor heart function and symptoms in males aged 8 and older and females aged 8 to 50. The goal is to gather natural history data that could support the development of new therapies.
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 study could provide crucial data to help design future treatments for Danon disease.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly help participants. It may not lead to immediate breakthroughs.
Disclaimer
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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.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Azienda Ospedaliera Universitaria Meyer IRCCS
RECRUITINGFlorence, 50139, Italy
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Children's Hospital Colorado
RECRUITINGAurora, Colorado, 80045, United States
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Columbia University Medical Center/New York Presbyterian
RECRUITINGNew York, New York, 10032, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Contact Email: •••••@•••••
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German Heart Center Munich
RECRUITINGMünchen, Germany
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Hospital Universitario Puerta de Hierro Majadahonda
RECRUITINGMajadahonda, Madrid, Spain
Contact Email: •••••@•••••
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Phoenix Children's Hospital
RECRUITINGPhoenix, Arizona, 85016, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Sheba Medical Center
RECRUITINGRamat Gan, 5265601, Israel
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Texas Children's Hospital
RECRUITINGHouston, Texas, 77030, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
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University College London - Great Ormond Street Institute of Child Health
RECRUITINGLondon, WC1N 1DZ, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Contact
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University of California, San Diego
RECRUITINGLa Jolla, California, 92037, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Florida College of Medicine
RECRUITINGGainesville, Florida, 32610, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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University of Michigan
RECRUITINGAnn Arbor, Michigan, 48109, United States
Contact
Contact Email: •••••@•••••
Contact
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Washington University
RECRUITINGSt Louis, Missouri, 63110, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••