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Groundbreaking study tracks rare genetic disorders to pave way for future treatments

NCT ID NCT06555965

First seen Nov 01, 2025 · Last updated May 23, 2026 · Updated 34 times

Summary

This study aims to learn more about STXBP1 and SYNGAP1 related disorders, which cause developmental delays, seizures, and intellectual disability. Researchers will follow 600 participants of any age who have a confirmed mutation in one of these genes, tracking their development, seizures, and quality of life over time. The information gathered will help design future clinical trials for potential treatments.

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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.

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Contacts and locations

Study contacts

  • Contact

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

  • Contact

    Email: •••••@•••••

Locations

  • Children's Hospital Colorado

    RECRUITING

    Aurora, Colorado, 80011, United States

    Contact

    Contact Email: •••••@•••••

  • Stanford Medicine Children's Health

    RECRUITING

    Palo Alto, California, 94304, United States

    Contact

    Contact Email: •••••@•••••

  • Texas Children's Hospital

    RECRUITING

    Houston, Texas, 77030, United States

    Contact Email: •••••@•••••

    Contact

  • The Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19403, United States

    Contact

    Contact Email: •••••@•••••

  • Weill Cornell Medicine

    RECRUITING

    New York, New York, 10065, United States

    Contact Email: •••••@•••••

    Contact

Conditions

Explore the condition pages connected to this study.