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Cicala","(+34) 932 54 34 50","carlocicala@vhio.net",{"facility":313,"status":31,"city":314,"state":314,"zip":315,"country":300,"countryCode":301,"cosmosGeoPoint":316,"geoPoint":320,"contacts":321},"Hospital Universitario Fundación Jiménez Díaz","Madrid","28040",{"type":37,"coordinates":317},[318,319],-3.70256,40.4165,{"lat":319,"lon":318},[322,326],{"name":323,"role":21,"phone":324,"phoneExt":10,"email":325},"Javier Martin","910908102","jmartin@atbsarc.org",{"name":327,"role":21,"phone":10,"phoneExt":10,"email":328},"Nadia Hindi","nhindi@atbsarc.org",{"facility":330,"status":31,"city":331,"state":332,"zip":333,"country":334,"countryCode":335,"cosmosGeoPoint":336,"geoPoint":340,"contacts":341},"Sahlgrenska University Hospital","Gothenburg","Göteborg","413 45","Sweden","SE",{"type":37,"coordinates":337},[338,339],11.96679,57.70716,{"lat":339,"lon":338},[342],{"name":343,"role":21,"phone":344,"phoneExt":10,"email":345},"Stefan Lindskog","0046709856200","stefan.lindskog@vgregion.se",{"facility":347,"status":31,"city":348,"state":348,"zip":349,"country":350,"countryCode":351,"cosmosGeoPoint":352,"geoPoint":356,"contacts":357},"The Royal Marsden Hospital","London","SW3 6JJ","United Kingdom","UK",{"type":37,"coordinates":353},[354,355],-0.12574,51.50853,{"lat":355,"lon":354},[358],{"name":359,"role":21,"phone":360,"phoneExt":10,"email":361},"Robin Jones","00442078082590","robin.jones4@nhs.net",{"type":363,"investigatorFullName":182,"investigatorTitle":364,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"PRINCIPAL_INVESTIGATOR","Principal Investigator","100547474","the-epithelioid-hemangioendothelioma-registry-of-the-european-reference-network-on-rare-adult-solid-cancers-euracan-100547474",false,"NCT06408441","The Epithelioid Hemangioendothelioma Registry of the European Reference Network on Rare Adult Solid Cancers (EURACAN)","The Observational EURACAN Prospective Clinical Registry Dedicated to Epithelioid Hemangioendothelioma: the Protocol of an International and Collaborative Effort on an Ultra-rare Entity","EHE","Inclusion Criteria:\n\n* 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\n* Molecular confirmation of the diagnosis (WWTR1-CAMTA1 or YAP1-TFE3)\n* Adult patients (aged ≥ 18 years)","ALL","18 Years",{"count":376,"type":377},100,"ESTIMATED","6 Months","OBSERVATIONAL","Epithelioid hemangioendothelioma (EHE) is an ultra-rare sarcoma, marked by distinctive molecular and pathological features and with a variable clinical behavior. Its natural history is still partially understood, reliable prognostic and predictive factors are lacking and many questions are still open on the optimal management. In the context of EURACAN, a prospective registry specifically dedicated to EHE was developed and launched with the aim of providing, through high-quality prospective data collection, a better understanding of this disease.\n\nThe study design is a registry-based cohort study including only new cases of patients with a pathological and molecularly confirmed diagnosis of EHE.\n\nThe objectives are to improve the understanding of EHE natural history, validate and identify new prognostic and predictive factors, clarify the activity and efficacy of currently available treatment options, describe treatment pattern.\n\nIt is an hospital-based registry established in centres with expertise in EHE including adult patients with a new pathological and molecularly confirmed diagnosis of EHE starting from the 1st December 2023. The characteristics of each patient in the facility who meets the above-mentioned inclusion criteria will be collected prospectively and longitudinally with follow-up at cancer progression and \u002F or cancer relapse or patient death.\n\nThe data analyses will include descriptive statistics and analytical analyses. Multivariable Cox's proportional hazards model and Hazard ratios (HR) for all-cause or cause-specific mortality will be used to determine independent predictors of overall survival, recurrence and progression.\n\nThe registry has been joined by 21 sarcoma reference centers across EU and UK, covering 10 countries. Patients' recruitment started in December 2023. The estimated completion date is December 2033 upon agreement on the achievement of all the registry objectives. The already established collaboration and participation of EHE patient's associations involved in the project will help in promoting the registry and fostering accrual.\n\nThis registry has been developed with the support of EHE Rare Cancer Charity UK, STATER (Grant Agreement number: 947604, HP-PJ-2019) and EURACAN 2022 (Grant Agreement number: 101085486, EU4H-2022-ERN-IBA) European Health and Digital Executive Agency (HaDEA)",[382,383],"Epithelioid Hemangioendothelioma","Sarcoma,Soft Tissue",[385,386,387,388,389],"rare cancers","soft tissue rare cancer","registry","protocol","ultra rare sarcomas","2026-03-30",{"date":392,"type":393},"2026-04-03","ACTUAL",{"date":395,"type":393},"2023-12-01",{"date":397,"type":377},"2033-12-01",{"name":5,"class":6},22]