Rare disease mystery: scientists track Smith-Magenis syndrome for decades
NCT ID NCT00013559
First seen Nov 01, 2025 · Last updated May 12, 2026 · Updated 32 times
Summary
This study follows nearly 600 people with Smith-Magenis syndrome (SMS), a rare genetic condition, to learn how it affects their health, development, and behavior over time. Researchers at the National Institutes of Health will conduct detailed exams, genetic tests, and surveys to better understand the syndrome and its causes. The goal is to improve diagnosis and future treatments, not to test a new therapy.
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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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Locations
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National Institutes of Health Clinical Center
Bethesda, Maryland, 20892, United States
Conditions
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