Registry for Epithelioid Hemangioendothelioma
Official title: The Observational EURACAN Prospective Clinical Registry Dedicated to Epithelioid Hemangioendothelioma: the Protocol of an International and Collaborative Effort on an Ultra-rare Entity
Run by Fondazione IRCCS Istituto Nazionale dei Tumori, Milano · NCT06408441 · Data updated 2026-11-12
This study is collecting information from people newly diagnosed with epithelioid hemangioendothelioma to better understand the disease and how it’s treated.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 100 (estimated) |
| Sponsor | Fondazione IRCCS Istituto Nazionale dei Tumori, Milano Academic / other |
| Drugs / interventions | chemotherapy, radiation |
| Locations | 22 sites (Graz, Graz and 21 other locations) |
| Status | Recruiting |
| Started | December 1, 2023 |
| Main results expected | December 1, 2033 |
| Study ends | December 1, 2033 |
| Registry record updated | April 3, 2026 |
| Trial ID | NCT06408441 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are adult patients aged 18 years and older with a newly diagnosed, pathologically confirmed case of EHE.
✕Probably not a fit
Patients with a diagnosis of EHE prior to December 1, 2023, or those without molecular confirmation of the diagnosis will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry collects high-quality prospective data on patients diagnosed with epithelioid hemangioendothelioma (EHE), an ultra-rare sarcoma. The study aims to improve understanding of the disease's natural history, identify prognostic factors, and evaluate treatment patterns and efficacy. It includes only new cases confirmed by expert pathologists and focuses on gathering comprehensive clinical data to address existing knowledge gaps. The registry is part of the European Reference Network on Rare Adult Solid Cancers (EURACAN).
Why it matters
Potential benefit: If successful, this registry could lead to improved management and treatment strategies for patients with epithelioid hemangioendothelioma.
How similar studies have gone: While this registry approach is novel for EHE, similar registries for rare cancers have shown success in improving understanding and treatment outcomes.
Who can join: the full rules
Show full inclusion / exclusion criteria
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)
Where it's running
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University Hospital Graz
Graz, Graz, Austria Recruiting -
Aarhus University Hospital
Aarhus, Aarhus, Denmark Recruiting -
Léon Bérard Center
Lyon, Lyon, France Recruiting -
Essen University Hospital
Essen, Hesse, Germany Recruiting -
Istituto Ortopedico Rizzoli
Bologna, Bologna, Italy Recruiting -
Azienda Ospedaliero Universitaria Careggi
Careggi, Firenze, Italy Recruiting
Show 16 more locations
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IRCCS Istituto Clinica Humanitas
Rozzano, Milano, Italy Recruiting -
Fondazione IRCCS Istituto Nazionale dei Tumori
Milan, Milan, Italy Recruiting -
Istituto Oncologico Veneto
Padova, Padova, Italy Recruiting -
Policlinico Universitario P. Giaccone
Palermo, Palermo, Italy Recruiting -
Nuovo Ospedale di Prato "S.Stefano"
Prato, Prato, Italy Recruiting -
Università Campus Bio-Medico
Roma, Roma, Italy Recruiting -
Istituto Nazionale dei Tumori Regina Elena
Roma, Roma, Italy Recruiting -
Azienda Ospedaliera Universitaria San Luigi Gonzaga
Orbassano, Torino, Italy Recruiting -
Maria Skłodowska-Curie Institute of Oncology
Warsaw, Warsaw, Poland Recruiting -
Vall d'Hebron University Hospital
Barcelona, Barcelona, Spain Recruiting -
Hospital Universitario Fundación Jiménez Díaz
Madrid, Madrid, Spain Recruiting -
Sahlgrenska University Hospital
Gothenburg, Göteborg, Sweden Recruiting -
The Royal Marsden Hospital
London, London, United Kingdom Recruiting -
Centre Oscar Lambret
Lille, France Not yet recruiting -
Campus Großhadern
München, Germany Not yet recruiting -
Instituto Português Oncologia do Porto Francisco Gentil
Porto, Portugal Not yet recruiting
Study contacts
- Study coordinator: Annalisa Trama, MD
- Email: annalisa.trama@istitutotumori.mi.it
- Phone: 02 2390 3535
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.