[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100476395":3},{"organization":4,"armGroups":7,"interventions":26,"overallOfficials":31,"centralContacts":35,"locations":42,"responsibleParty":180,"collaborators":183,"id":194,"slug":195,"hasResults":196,"nctId":197,"briefTitle":198,"officialTitle":199,"acronym":200,"eligibilityCriteria":201,"healthyVolunteers":196,"sex":202,"minAge":203,"maxAge":10,"enrollmentInfo":204,"targetDuration":10,"studyType":207,"phases":10,"briefSummary":208,"conditions":209,"keywords":215,"overallStatus":72,"whyStopped":10,"lastUpdateSubmitDate":220,"lastUpdatePostDateStruct":221,"startDateStruct":224,"completionDateStruct":226,"leadSponsor":228,"locationsCount":229},{"fullName":5,"class":6},"Fondazione IRCCS Istituto Nazionale dei Tumori, Milano","OTHER",[8,14,18,22],{"label":9,"type":10,"description":11,"interventionNames":12},"epithelial tumours of nasal cavity and paranasal sinus",null,"adult patients diagnosed with nasal cavity and paranasal sinus cancers (any stage of disease)",[13],"Other: observation",{"label":15,"type":10,"description":16,"interventionNames":17},"epithelial tumours of nasopharynx","adult patients diagnosed with nasopharyngeal cancers (any stage of disease)",[13],{"label":19,"type":10,"description":20,"interventionNames":21},"minor and major salivary gland tumours","adult patients diagnosed with minor or major salivary gland cancers (any stage of disease)",[13],{"label":23,"type":10,"description":24,"interventionNames":25},"middel ear tumours","adult patients diagnosed with cancers of the middle ear (any stage of disease)",[13],[27],{"type":6,"name":28,"description":29,"armGroupLabels":30,"otherNames":10},"observation","Not applicable, it is an observational registry",[9,15,23,19],[32],{"name":33,"affiliation":5,"role":34},"Annalisa Trama, MD","PRINCIPAL_INVESTIGATOR",[36],{"name":37,"role":38,"phone":39,"phoneExt":40,"email":41},"Lucia Buratti","CONTACT","0223902901","+39","EURACANregistry@istitutotumori.mi.it",[43,59,70,86,101,112,126,139,153,166],{"facility":44,"status":45,"city":46,"state":46,"zip":47,"country":48,"countryCode":10,"cosmosGeoPoint":49,"geoPoint":54,"contacts":55},"Masaryk Memorial Cancer Institute","NOT_YET_RECRUITING","Brno","656 53","Czechia",{"type":50,"coordinates":51},"Point",[52,53],16.60796,49.19522,{"lat":53,"lon":52},[56],{"name":57,"role":38,"phone":10,"phoneExt":10,"email":58},"Jana Halámková","jana.halamkova@mou.cz",{"facility":60,"status":45,"city":61,"state":62,"zip":63,"country":64,"countryCode":65,"cosmosGeoPoint":10,"geoPoint":10,"contacts":66},"University Hospital Essen","Essen","Hesse","45147","Germany","DE",[67],{"name":68,"role":38,"phone":10,"phoneExt":10,"email":69},"Stefan Mattheis","Stefan.Mattheis@uk-essen.de",{"facility":71,"status":72,"city":73,"state":73,"zip":74,"country":75,"countryCode":76,"cosmosGeoPoint":77,"geoPoint":81,"contacts":82},"IRCCS Ospedale Policlinico San Martino","RECRUITING","Genova","16132","Italy","IT",{"type":50,"coordinates":78},[79,80],11.87211,45.21604,{"lat":80,"lon":79},[83],{"name":84,"role":38,"phone":10,"phoneExt":10,"email":85},"Almalina Bacigalupo","almalina.bacigalupo@hsanmartino.it",{"facility":87,"status":72,"city":88,"state":89,"zip":90,"country":75,"countryCode":76,"cosmosGeoPoint":91,"geoPoint":95,"contacts":96},"IRCCS Ospedale San Raffaele","Milan","Milano","20132",{"type":50,"coordinates":92},[93,94],12.59836,42.78235,{"lat":94,"lon":93},[97],{"name":98,"role":38,"phone":99,"phoneExt":40,"email":100},"Aurora Mirabile","02 26 43 60 33","mirabile.aurora@hsr.it",{"facility":102,"status":72,"city":88,"state":89,"zip":103,"country":75,"countryCode":76,"cosmosGeoPoint":104,"geoPoint":106,"contacts":107},"IRCCS Istituto Europeo di Oncologia","20141",{"type":50,"coordinates":105},[93,94],{"lat":94,"lon":93},[108],{"name":109,"role":38,"phone":110,"phoneExt":40,"email":111},"Marta Tagliabue","3402835118","marta.tagliabue@ieo.it;",{"facility":113,"status":72,"city":114,"state":89,"zip":115,"country":75,"countryCode":76,"cosmosGeoPoint":116,"geoPoint":120,"contacts":121},"IRCCS Istituto Clinica Humanitas","Rozzano","20089",{"type":50,"coordinates":117},[118,119],9.1559,45.38193,{"lat":119,"lon":118},[122],{"name":123,"role":38,"phone":124,"phoneExt":40,"email":125},"Giuseppe Mercante","02 0224 4602","giuseppe.mercante@hunimed.eu",{"facility":127,"status":72,"city":88,"state":88,"zip":128,"country":75,"countryCode":76,"cosmosGeoPoint":129,"geoPoint":133,"contacts":134},"Fondazione IRCCS Istituto Nazionale dei Tumori","20133",{"type":50,"coordinates":130},[131,132],9.18951,45.46427,{"lat":132,"lon":131},[135],{"name":136,"role":38,"phone":137,"phoneExt":40,"email":138},"Simone Bonfarnuzzo","02 2390 3562","simone.bonfarnuzzo@istitutotumori.mi.it",{"facility":140,"status":72,"city":141,"state":141,"zip":142,"country":75,"countryCode":76,"cosmosGeoPoint":143,"geoPoint":147,"contacts":148},"Centro Nazionale di Adroterapia Oncologica","Pavia","27100",{"type":50,"coordinates":144},[145,146],9.15917,45.19205,{"lat":146,"lon":145},[149],{"name":150,"role":38,"phone":151,"phoneExt":40,"email":152},"Nadia Facchinetti","0382-078 406","nadia.facchinetti@cnao.it",{"facility":154,"status":45,"city":155,"state":155,"zip":156,"country":75,"countryCode":76,"cosmosGeoPoint":157,"geoPoint":161,"contacts":162},"Nuovo Ospedale di Prato - S. Stefano","Prato","59100",{"type":50,"coordinates":158},[159,160],11.09699,43.8805,{"lat":160,"lon":159},[163],{"name":164,"role":38,"phone":10,"phoneExt":10,"email":165},"Giacomo Giulio Baldi","giacomogiulio.baldi@uslcentro.toscana.it",{"facility":167,"status":72,"city":168,"state":168,"zip":169,"country":75,"countryCode":76,"cosmosGeoPoint":170,"geoPoint":174,"contacts":175},"IRCCS Istituto Nazionale Tumori Regina Elena","Roma","00144",{"type":50,"coordinates":171},[172,173],11.10642,44.99364,{"lat":173,"lon":172},[176],{"name":177,"role":38,"phone":178,"phoneExt":40,"email":179},"Valentina Manciocco","06 52664488","valentina.manciocco@ifo.it",{"type":34,"investigatorFullName":181,"investigatorTitle":182,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"Annalisa Trama","Head of the Epidemiology Valutative Unit",[184,187,190,192],{"name":185,"class":186},"Associazione Italiana Oncologia Cervico Cefalica","UNKNOWN",{"name":188,"class":189},"Ministry of Health, Italy","OTHER_GOV",{"name":191,"class":6},"European Union",{"name":193,"class":6},"Alleanza Contro il Cancro","100476395","the-head-and-neck-registry-of-the-european-reference-network-on-rare-adult-solid-cancers-100476395",false,"NCT05483374","The Head and Neck Registry of the European Reference Network on Rare Adult Solid Cancers","The Observational Clinical Registry of the European Reference Network on Rare Adult Solid Cancers: the Protocol for the Rare Head and Neck Cancers","EURACAN","Inclusion Criteria:\n\n* Patients with epithelial tumours of nasopharynx; nasal cavity and paranasal sinuses; salivary gland cancer in large and small salivary glands; and middle ear (i.e. squamous carcinoma; adenocarcinoma; neuroendocrine; adenosquamous carcinoma, teratocarcinosarcoma, NUT carcinoma, odontogenic tumors) + neuroendocrine and adenocarcinoma in hypopharynx; oropharynx; larynx; oral cavity and lip + odontogenic carcinoma in oral cavity.\n* Adult patients (aged ≥18 years).\n* Diagnosis performed or verified by the expert centre entering the patient information in the registry.\n* Patients entering the HCP at any clinical phase of the disease (diagnosis, treatment of primary cancer, treatment of recurrence, treatment of M+ etc.). The HCP can decide, based on its resources, the number of patients on whom it can collect data.\n* New patients managed by the HCP from 2021 onwards plus patients managed by the HCP, who are actively followed up at the hospital, with year of diagnosis dating back to maximum 2018.\n\nExclusion Criteria:\n\n• Patients (aged \\\u003C 18 years)","ALL","18 Years",{"count":205,"type":206},13600,"ESTIMATED","OBSERVATIONAL","Cancer care for head and neck cancers is multidisciplinary and complex and knowledge on the rare ones is limited. There is a wide consensus that to support clinical research on rare cancers, clinical registries should be developed within networks specializing in rare cancers. Our hypothesis is that our head and neck cancer registry established in the framework of the European reference network on rare adults solid cancers will help to: describe the natural history of rare head and neck cancers; evaluate factors that influence prognosis; assess treatment effectiveness; measure indicators of quality of care.\n\nThe registry is a prospective observational real-world registry. It collects data from already available registries\u002Fdatabase and\u002For directly from expert health care providers (HCP). Information are prospectively collected on patient characteristics; exposure, outcomes and potential confounders (https:\u002F\u002Feuracan.eu\u002Fresearch\u002Fstarter\u002Frare-head-and-neck-cancer-registry\u002F#codebook).\n\nThe registry if federated (i.e. data are stored by the data provider). Analyses will be performed using the federated learning approach which split computations into a local part and a central part. The data providers will share sub-computations only. Data quality checks are envisioned to assess whether data value are present, valid and believable. Validity and plausibility checks are embedded in the electronic case report form (CRF) in the form of alerts and errors during the data input. Additional checks are implemented in R and run using the federated learning to ensure a central data quality monitoring. The data analyses will include descriptive statistics showing frequency and patterns of patients' and cancers' variables; analytical analyses investigating the association of patients\u002Fdisease and\u002For treatment characteristics and health outcomes.\n\nFondazione IRCCS Istituto Nazionale dei Tumori (INT) is the coordinator of the EURACAN registry as well as a data provider. At the INT, and at each HCP involved, responsible investigators ensure that the EURACAN registry will be implemented in compliance with the protocol, following the instructions and procedures described herein. Each HCP is a controller and will identify a data processor. The processing of patients' personal data taking part in the registry is compliant with local privacy legislation and the General Data Protection Regulation 2016\u002F679 of the EU.",[210,211,212,213,214],"Head and Neck Cancer","Nasopharynx Cancer","Nasal Cavity and Paranasal Sinus Cancer","Salivary Gland Cancer","Middle Ear Carcinoma",[216,217,218,219],"Rare cancers","head and neck cancers","registry","protocol","2026-03-30",{"date":222,"type":223},"2026-04-03","ACTUAL",{"date":225,"type":223},"2022-05-31",{"date":227,"type":206},"2030-12-31",{"name":5,"class":6},10]