Scientists track rare genetic heart disease to find better treatments

NCT ID NCT06214507

Summary

This study aims to understand how Danon disease, a rare and severe genetic heart condition, progresses over time in patients. Researchers will collect medical information from about 60 male and female patients, both from their past records and by following them forward. The goal is to gather detailed data on symptoms, heart function, and quality of life to better understand the disease and help design future treatments.

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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Contacts and locations

Study contacts

  • Contact

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

Locations

  • Azienda Ospedaliero Universitaria

    RECRUITING

    Florence, 50139, Italy

    Contact

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

  • Children's Hospital Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

    Contact

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

  • Columbia University Medical Center/New York Presbyterian

    RECRUITING

    New York, New York, 10032, United States

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

    Contact

    Contact Email: •••••@•••••

  • German Heart Center Munich

    RECRUITING

    München, Germany

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

    Contact

  • Hospital Universitario Puerta de Hierro Majadahonda

    RECRUITING

    Majadahonda, Madrid, Spain

    Contact Email: •••••@•••••

    Contact

  • Phoenix Children's Hospital

    RECRUITING

    Phoenix, Arizona, 85016, United States

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

    Contact

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

  • Sheba Medical Center

    RECRUITING

    Ramat Gan, 5265601, Israel

    Contact

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

  • Texas Children's Hospital

    RECRUITING

    Houston, Texas, 77030, United States

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

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

    Contact

  • University College London - Great Ormond Street Institute of Child Health

    RECRUITING

    London, WC1N 1DZ, United Kingdom

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

    Contact

    Contact

  • University of California, San Diego

    RECRUITING

    La Jolla, California, 92037, United States

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

    Contact

  • University of Florida College of Medicine

    RECRUITING

    Gainesville, Florida, 32610, United States

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

    Contact

  • University of Michigan

    RECRUITING

    Ann Arbor, Michigan, 48109, United States

    Contact

    Contact Email: •••••@•••••

    Contact

  • Washington University

    RECRUITING

    St Louis, Missouri, 63110, United States

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

    Contact

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

Conditions

Explore the condition pages connected to this study.