Rare disease mystery: researchers hunt for clues to predict patient futures

NCT ID NCT07454343

Recruiting now Knowledge-focused Sponsor: Meyer Children's Hospital IRCCS Source: ClinicalTrials.gov ↗

Summary

This study aims to better predict the long-term survival and quality of life for people with Erdheim-Chester disease (ECD), a very rare and complex condition. Researchers will analyze detailed medical information from up to 1,000 patients worldwide to identify which factors most influence how the disease progresses over time. The goal is to create a tool to help doctors provide more accurate information about a patient's future outlook.

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.

Get updates

Get notified about this study

Our safety recommendation!

By submitting, you agree to our Terms of use

Contacts and locations

Show contact details

Study contacts

Contact

Phone: •••-•••-•••• Email: •••••@•••••

Locations

Hopital Pitiè-Salpetriere
NOT_YET_RECRUITING

Paris, France

Contact
Mayo Clinic
NOT_YET_RECRUITING

Rochester, Minnesota, 55902, United States

Contact
Memorial Sloan Kettering Cancer Center
NOT_YET_RECRUITING

New York, New York, 10065, United States

Contact
Meyer Children's Hospital IRCCS, Firenze
RECRUITING

Florence, Fi, 50134, Italy

Contact Phone: •••-•••-•••• Email: •••••@•••••
National Institute of Health
NOT_YET_RECRUITING

Bethesda, Maryland, 20892, United States

Contact
Newcastle Upon Tyne Hospitals NHS Foundation Trust
NOT_YET_RECRUITING

Newcastle, Newcastel, United Kingdom

Contact
San Raffaele Hospital
NOT_YET_RECRUITING

Milan, Italy, Italy

Contact

Conditions

Explore the condition pages connected to this study.

ERDHEIM-CHESTER DISEASE (ECD)