Registry for Epithelioid Hemangioendothelioma
The Observational EURACAN Prospective Clinical Registry Dedicated to Epithelioid Hemangioendothelioma: the Protocol of an International and Collaborative Effort on an Ultra-rare Entity
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 |
|---|---|
| Enrollment | 100 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Fondazione IRCCS Istituto Nazionale dei Tumori, Milano Academic / other |
| Drugs / interventions | chemotherapy, radiation |
| Locations | 22 sites (Graz, Graz and 21 other locations) |
| Trial ID | NCT06408441 on ClinicalTrials.gov |
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).
Who should consider this trial
Good fit: Ideal candidates are adult patients aged 18 years and older with a newly diagnosed, pathologically confirmed case of EHE.
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.
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 performed: While this registry approach is novel for EHE, similar registries for rare cancers have shown success in improving understanding and treatment outcomes.
Eligibility criteria
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 this trial is running
Graz, Graz and 21 other locations
- University Hospital Graz — Graz, Graz, Austria (Recruiting)
- Aarhus University Hospital — Aarhus, Aarhus, Denmark (Recruiting)
- Léon Bérard Center — Lyon, Lyon, France (Recruiting)
- Centre Oscar Lambret — Lille, France (Not_yet_recruiting)
- Essen University Hospital — Essen, Hesse, Germany (Recruiting)
- Campus Großhadern — München, Germany (Not_yet_recruiting)
- Istituto Ortopedico Rizzoli — Bologna, Bologna, Italy (Recruiting)
- Azienda Ospedaliero Universitaria Careggi — Careggi, Firenze, Italy (Recruiting)
- 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)
- Instituto Português Oncologia do Porto Francisco Gentil — Porto, Portugal (Not_yet_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)
Study contacts
- Study coordinator: Annalisa Trama, MD
- Email: annalisa.trama@istitutotumori.mi.it
- Phone: 02 2390 3535
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.