The observational EURACAN prospective clinical registry dedicated to epithelioid hemangioendothelioma: The protocol of an international and collaborative effort on an ultra-rare entity.
Anna Maria FrezzaHugh LeonardNinna Aggerholm-PedersenGiuseppe BadalamentiPaolo BailiGiacomo G BaldiSebastian BauerSerena BazzurriIrene BenzonelliAlexia BertuzziJean Yves BlayGiuseppe BianchiSimone BonfarnuzzoChristophe BouvierKyetil BoyeJavier Martin BrotoAntonella BrunelloDomenico CampanacciPaolo G CasaliCarlo CicalaElisa CrottiLorenzo D'AmbrosioAngelo Paolo Dei TosNils DieckmannArmelle DufresneStephanie ElstonVirginia FerraresiStefano GabelliniClaudia GianiVincenzo GiannusaMelissa Gil SanjinesTeresa GrassaniAlessandro GronchiPaolo LasalviaStefan LindskogNadia HindiMatilde IngrossoAndrei IvanescuRobin JonesIwona LugowskaJulia KetzerAnna Mariuk-JaremaAlessandro MazzoccaLaura MonteleoneCarlo MorosiAndrea NapolitanoFrancesca NardozzaElisabetta NeriMaria NilssonAndri PapakonstantinouSandro PasqualiMarta SbaragliaFederico ScolariJoanna SzkanderaClaudia ValverdeBruno VincenziSalvatore VizzaccaroFederica ZuccheriSilvia StacchiottiAnnalisa TramaPublished in: PloS one (2024)
The 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.