Rare disease mystery: researchers launch global registry to track lymphatic disorders
NCT ID NCT02399527
First seen Apr 25, 2026 · Last updated May 11, 2026 · Updated 2 times
Summary
This study is creating a registry of up to 1,000 people with rare lymphatic anomalies (such as lymphatic malformation, Gorham-Stout disease, and CLOVES syndrome). Researchers will collect information from medical records and annual questionnaires to learn how these conditions progress, what treatments are used, and how they affect quality of life. No new treatments are being tested; the goal is to gather knowledge to improve future care.
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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: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Boston Children's Hospital
RECRUITINGBoston, Massachusetts, 02115, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Conditions
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