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Rare disease researchers build a crystal ball for long-term prognosis

NCT ID NCT07454343

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2024

Expected to finish

Dec 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with ECD will be recruited and will attend outpatient visits at the study coordination center at the Meyer IRCCS University Hospital (Florence) and other participating centers. The patients to be enrolled will be "prevalent" and "incident" patients during the 5-year study period. Patients undergoing follow-up at their respective centers will be involved in the study, as well as those who receive a new diagnosis of ECD during the study period.

Ages

7 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * informed consent signed by the patient or, for minors, by a parent or legal guardian * confirmed diagnosis of ECD according to the latest international guidelines (Goyal G, Blood 2020) * availability of clinical, molecular, treatment and response to therapy data * a minimum follow-up period of one year. Exclusion Criteria: * lack of diagnostic or follow-up data * refusal or inability to sign the informed consent form

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Conditions

The condition(s) this trial relates to.

Erdheim-Chester disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Erdheim-chester disease (ECD)

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    7 sites in 4 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Hopital Pitiè-Salpetriere

    NOT_YET_RECRUITING

    Paris, France

  • Mayo Clinic

    NOT_YET_RECRUITING

    Rochester, Minnesota, 55902, United States

  • Memorial Sloan Kettering Cancer Center

    NOT_YET_RECRUITING

    New York, New York, 10065, United States

  • Meyer Children's Hospital IRCCS, Firenze

    RECRUITING

    Florence, Fi, 50134, Italy

  • National Institute of Health

    NOT_YET_RECRUITING

    Bethesda, Maryland, 20892, United States

  • Newcastle Upon Tyne Hospitals NHS Foundation Trust

    NOT_YET_RECRUITING

    Newcastle, Newcastel, United Kingdom

  • San Raffaele Hospital

    NOT_YET_RECRUITING

    Milan, Italy, Italy