Researchers launch registry to understand rare genetic disorders
NCT ID NCT03303716
First seen Jan 11, 2026 · Last updated May 18, 2026 · Updated 24 times
Summary
This study collects information from people with ASXL-related disorders (such as Bohring-Opitz syndrome) to learn how these conditions progress and are managed. Researchers will use surveys and medical records to gather data. The goal is to improve treatment and care for these rare genetic conditions.
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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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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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University of California, Los Angeles
RECRUITINGLos Angeles, California, 90095, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.