Scientists launch registry to unravel mysteries of rare genetic disorders

NCT ID NCT03303716

First seen Jan 11, 2026 · Last updated May 12, 2026 · Updated 23 times

Summary

This study collects information from people with rare genetic conditions caused by changes in the ASXL1, ASXL2, or ASXL3 genes. Researchers want to understand how these disorders progress over time and how they are currently managed. Up to 200 participants will share their medical records and complete surveys. The goal is to improve future care and treatment for these conditions.

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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: •••••@•••••

Locations

  • University of California, Los Angeles

    RECRUITING

    Los Angeles, California, 90095, United States

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

Conditions

Explore the condition pages connected to this study.