New registry aims to unlock secrets of rare dwarfism disorders

NCT ID NCT04569149

First seen Nov 01, 2025 · Last updated May 16, 2026 · Updated 22 times

Summary

This study creates a registry for people with microcephalic primordial dwarfism and related conditions. Researchers will collect health information over time to understand how these rare diseases progress and affect people throughout their lives. The goal is to improve future care and knowledge for up to 200 participants.

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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

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

Locations

  • Nemours

    RECRUITING

    Wilmington, Delaware, 19803, United States

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

    Contact

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

Conditions

Explore the condition pages connected to this study.