New study aims to forecast rare disease outcomes
NCT ID NCT07454343
First seen Mar 09, 2026 · Last updated Apr 28, 2026 · Updated 7 times
Summary
This study is for people with Erdheim-Chester disease (ECD), a rare condition that causes abnormal cells to build up in bones and organs. Researchers will collect medical data from 1,000 patients to find patterns that predict survival and disability. The goal is to create a tool that helps doctors give more accurate information about what to expect over time.
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the original study
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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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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Hopital Pitiè-Salpetriere
NOT_YET_RECRUITINGParis, France
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Mayo Clinic
NOT_YET_RECRUITINGRochester, Minnesota, 55902, United States
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Memorial Sloan Kettering Cancer Center
NOT_YET_RECRUITINGNew York, New York, 10065, United States
Contact
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Meyer Children's Hospital IRCCS, Firenze
RECRUITINGFlorence, Fi, 50134, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
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National Institute of Health
NOT_YET_RECRUITINGBethesda, Maryland, 20892, United States
Contact
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Newcastle Upon Tyne Hospitals NHS Foundation Trust
NOT_YET_RECRUITINGNewcastle, Newcastel, United Kingdom
Contact
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San Raffaele Hospital
NOT_YET_RECRUITINGMilan, Italy, Italy
Contact
Conditions
Explore the condition pages connected to this study.