Rare disease researchers build a crystal ball for long-term prognosis
NCT ID NCT07454343
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study aims to create a better way to predict long-term outcomes for people with Erdheim-Chester disease (ECD), a rare condition that causes abnormal cells to build up in bones and organs. Researchers will analyze data from 1000 patients to identify factors that affect survival, disability, and quality of life. The goal is to develop a comprehensive score that helps doctors give more accurate prognoses and improve patient care.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
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
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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
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Newcastle Upon Tyne Hospitals NHS Foundation Trust
NOT_YET_RECRUITINGNewcastle, Newcastel, United Kingdom
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San Raffaele Hospital
NOT_YET_RECRUITINGMilan, Italy, Italy
Contact