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Scientists launch international registry to crack the code of ultra-rare cancer EHE

NCT ID NCT06408441

Knowledge-focused Sponsor: Fondazione IRCCS Istituto Nazionale dei Tumori, Milano 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 creates a registry to collect information from 100 adults newly diagnosed with epithelioid hemangioendothelioma (EHE), an ultra-rare sarcoma. Researchers will track patients over time to understand how the disease progresses, what factors affect outcomes, and which treatments are used. The goal is to improve knowledge and care for this rare cancer.

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 100 people

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

Started

Dec 2023

Expected to finish

Dec 2033

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

It is an hospital based registry thus, hospitals experts in rare cancer. This registry will not select a sample of patients, but it will include every accordant patient present in each facility.

Ages

18 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: * New patients managed by the contributing centers with a pathological EHE diagnosis performed or verified by an expert sarcoma pathologist starting from 1 December 2023 onwards and to be performed within 6 months from the registration * Molecular confirmation of the diagnosis (WWTR1-CAMTA1 or YAP1-TFE3) * Adult patients (aged ≥ 18 years)

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Conditions

The condition(s) this trial relates to.

epithelioid hemangioendothelioma sarcoma soft tissue sarcoma

As listed by the trial registrant

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

Epithelioid hemangioendothelioma Sarcoma,soft tissue

How to take part

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

  1. The places running it

    22 sites in 10 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

  • Aarhus University Hospital

    RECRUITING

    Aarhus, Aarhus, 8200, Denmark

  • Azienda Ospedaliera Universitaria San Luigi Gonzaga

    RECRUITING

    Orbassano, Torino, 10043, Italy

  • Azienda Ospedaliero Universitaria Careggi

    RECRUITING

    Careggi, Firenze, 50134, Italy

  • Campus Großhadern

    NOT_YET_RECRUITING

    München, Germany

  • Centre Oscar Lambret

    NOT_YET_RECRUITING

    Lille, France

  • Essen University Hospital

    RECRUITING

    Essen, Hesse, 45147, Germany

  • Fondazione IRCCS Istituto Nazionale dei Tumori

    RECRUITING

    Milan, Milan, 20133, Italy

  • Hospital Universitario Fundación Jiménez Díaz

    RECRUITING

    Madrid, Madrid, 28040, Spain

  • IRCCS Istituto Clinica Humanitas

    RECRUITING

    Rozzano, Milano, 20089, Italy

  • Instituto Português Oncologia do Porto Francisco Gentil

    NOT_YET_RECRUITING

    Porto, Portugal

  • Istituto Nazionale dei Tumori Regina Elena

    RECRUITING

    Roma, Roma, 00144, Italy

  • Istituto Oncologico Veneto

    RECRUITING

    Padova, Padova, 35128, Italy

  • Istituto Ortopedico Rizzoli

    RECRUITING

    Bologna, Bologna, 40136, Italy

  • Léon Bérard Center

    RECRUITING

    Lyon, Lyon, 69008, France

  • Maria Skłodowska-Curie Institute of Oncology

    RECRUITING

    Warsaw, Warsaw, 00-001, Poland

  • Nuovo Ospedale di Prato "S.Stefano"

    RECRUITING

    Prato, Prato, 59100, Italy

  • Policlinico Universitario P. Giaccone

    RECRUITING

    Palermo, Palermo, 90127, Italy

  • Sahlgrenska University Hospital

    RECRUITING

    Gothenburg, Göteborg, 413 45, Sweden

  • The Royal Marsden Hospital

    RECRUITING

    London, London, SW3 6JJ, United Kingdom

  • University Hospital Graz

    RECRUITING

    Graz, Graz, 8036, Austria

  • Università Campus Bio-Medico

    RECRUITING

    Roma, Roma, 00128, Italy

  • Vall d'Hebron University Hospital

    RECRUITING

    Barcelona, Barcelona, 08035, Spain

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