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.

Disclaimer Read more

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

Sign up to get updates when this study changes or when new studies for ERDHEIM-CHESTER DISEASE (ECD) are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Contacts and locations

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.