The observational clinical registry (cohort design) of the European Reference Network on Rare Adult Solid Cancers: The protocol for the rare head and neck cancers

• Annalisa Trama ,

  Roles Conceptualization, Funding acquisition, Project administration, Writing – original draft

  * E-mail: Annalisa.trama@istitutotumori.mi.it

  Affiliation Department of Epidemiology and Data Science, Evaluative Epidemiology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy

  https://orcid.org/0000-0001-8220-9833

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• Lisa Licitra,

  Roles Conceptualization, Writing – original draft

  Affiliations Head and Neck Medical Oncology Department, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy, Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy

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• Stefano Cavalieri,

  Roles Conceptualization, Writing – original draft

  Affiliations Head and Neck Medical Oncology Department, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy, Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy

  https://orcid.org/0000-0003-1294-6859

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• Simone Bonfarnuzzo,

  Roles Conceptualization, Project administration, Software, Writing – original draft

  Affiliation Department of Epidemiology and Data Science, Data Science Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy

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• Paolo Baili,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Epidemiology and Data Science, Data Science Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy

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• Antonio Ciarfella,

  Roles Conceptualization, Writing – original draft

  Affiliation Head and Neck Medical Oncology Department, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milano, Italy

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• Pablo Parente,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Otorhinolaryngologyand Head and Neck Surgery, La Corunna University Hospital, Corunna, Spain

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• Giovanni Almadori,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Head-Neck Oncology, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Largo A. Gemelli, Rome, Italy

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• Mohssen Ansarin,

  Roles Conceptualization, Writing – original draft

  Affiliation Head and Neck Program and Division of Otolaryngology Head &Nech Surgery, European Institue of Oncology, Milan, Italy

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• Almalina Bacigalupo,

  Roles Conceptualization, Writing – original draft

  Affiliation Radioterapia Oncologica, IRCCS-AOU Ospedale Policlinico San Martino – IST, Genoa, Italy

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• Philipp Baumeister,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Otorhinolaryngology, Head and Neck Surgery, University Hospital, Ludwig-Maximilians University, Munich, Germany

  https://orcid.org/0000-0003-2759-4737

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• Bertrand Baujat,

  Roles Conceptualization, Writing – original draft

  Affiliation Otorhinolaryngology – Head and Neck surgery Department, APHP/Sorbonne Université, Hospital Tenon, Paris, France

  https://orcid.org/0000-0003-3930-3191

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• Paolo Bossi,

  Roles Conceptualization, Writing – original draft

  Affiliation Medical Oncology Unit, Department of Medical and Surgical Specialities, Radiological Sciences and Public Health, University of Brescia, ASST Ospedali Civili, Brescia, Italy

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• Elisa Cavalera,

  Roles Conceptualization, Writing – original draft

  Affiliation Department Oncological Radiotherapy, "Vito Fazzi" Hospital, Lecce, Italy

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• Maria Cecilia Cercato,

  Roles Conceptualization, Writing – original draft

  Affiliation Epidemiology and Cancer Registry Unit – IRCCS Regina Elena National Cancer Institute, Rome, Italy

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• Francois Dieleman,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Head and Neck Surgical Oncology, UMC Utrecht Centre of Expertise for Head and Neck Cancer, UMC Utrecht Cancer Centre, Utrecht, the Netherlands

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• Nicolas Fakhry,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Oto-Rhino-Laryngology Head and Neck Surgery, La Conception University Hospital, AP-HM, Aix Marseille University, Marseilles, France

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• Virginia Ferraresi,

  Roles Conceptualization, Writing – original draft

  Affiliation Sarcoma and Rare Tumours Departmental Unit-IRCCS Regina Elena National Cancer Institute-Rome, Rome, Italy

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• Francesca Gaino,

  Roles Conceptualization, Writing – original draft

  Affiliations Department of Biomedical Sciences, Humanitas University, Pieve Emanuele (MI), Italy, Department of Otorhinolaryngology - Head and Neck Surgery, IRCCS Humanitas Research Hospital, Rozzano (MI), Italy

  https://orcid.org/0000-0001-5670-0848

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• Danilo Galizia,

  Roles Conceptualization, Writing – original draft

  Affiliation Istituto di Candiolo, FPO - IRCCS, Candiolo (TO), Italy

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• Jana Halamkova,

  Roles Conceptualization, Writing – original draft

  Affiliations Department of Comprehensive Cancer Care, Masaryk Memorial Cancer Institute, Brno, Czech Republic, Faculty of Medicine, Department of Comprehensive Cancer Care, Masaryk University, Brno, Czech Republic

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• Elina Halme,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Otorhinolaryngology - Head and Neck Surgery, Tampere University Hospital, Tampere, Finland

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• Jose Hardillo,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of otorhinolaryngology - Head and neck surgery, Erasmus University Medical Centre Rotterdam, Rotterdam, the Netherlands

  https://orcid.org/0000-0001-5580-5613

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• Benedikt Hofauer,

  Roles Conceptualization, Writing – original draft

  Affiliation Comprehensive Cancer Centre Munich, Munich, Germany

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• Emma Kinloch,

  Roles Conceptualization, Writing – original draft

  Affiliation Salivary Gland Cancer UK, International House, London, United Kingdom

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• Lorenzo Livi,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Oncological Radiotherapy, Azienda Ospedaliero-Universitaria Careggi, Florence, Italy

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• Laura Deborah Locati,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Medical Oncology of Head and Neck Tumours, ICS Maugeri SpA SB - IRCCS, Pavia, Italy

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• Stefan Mattheis,

  Roles Conceptualization, Writing – original draft

  Affiliation Ear, Nose and Throat Clinic, Essen Univerity Hospital, Essen, Germany

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• Giuseppe Mercante,

  Roles Conceptualization, Writing – original draft

  Affiliations Department of Biomedical Sciences, Humanitas University, Pieve Emanuele (MI), Italy, Department of Otorhinolaryngology - Head and Neck Surgery, IRCCS Humanitas Research Hospital, Rozzano (MI), Italy

  https://orcid.org/0000-0002-1009-7892

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• Aurora Mirabile,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Medical Oncology, IRCCS San Raffaele, Milan, Italy

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• Gabriele Molteni,

  Roles Conceptualization, Writing – original draft

  Affiliation Otolaryngology Head and Neck Surgery Department, University Hospital, Verona, Italy

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• Ester Orlandi,

  Roles Conceptualization, Writing – original draft

  Affiliation Clinical Department, Radiotherapy Unit, National Centre for Oncological Hadrontherapy (Fondazione CNAO), Pavia, Italy

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• Roberto Persio,

  Roles Conceptualization, Writing – original draft

  Affiliation Italian Association of Laryngectomees, Milan, Italy

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• Stefania Sciallero,

  Roles Conceptualization, Writing – original draft

  Affiliation Medical Oncology Unit 1, IRCCS Ospedale Policlinico San Martino, Genoa, Italy

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• Ludi Smeele,

  Roles Conceptualization, Writing – original draft

  Affiliation Department of Head and Neck surgery, Surgical Oncology Division, Netherlands Cancer Institute, Amsterdam, the Netherlands

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• Marta Tagliabue,

  Roles Conceptualization, Writing – original draft

  Affiliations Department of Otolaryngology Head & Neck Surgery, IEO, European Institute of Oncology IRCCS, Milan, Italy, Department of Biomedical Sciences, University of Sassari, Sassari, Italy

  https://orcid.org/0000-0002-7879-4846

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• Valentino Valentini,

  Roles Conceptualization, Writing – original draft

  Affiliation Unit of Surgical Oncology, Maxillo Facial Reconstruction, Policlinico Umberto I, Rome, Italy

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• Carla Van Harpen,

  Roles Conceptualization, Writing – original draft

  Affiliation Department Medical Oncology, Radboud University Medical Centre, HB Nijmegen (HP 455), Nijmegen, the Netherlands

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• Christoph Benedikt Westphalen,

  Roles Conceptualization, Writing – original draft

  Affiliation Comprehensive Cancer Centre Munich & Department of Medicine III, German Cancer Consortium (DKTK), Ludwig Maximilian University of Munich, Munich, Germany

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•  [ ... ],
• Laura Botta

  Roles Conceptualization, Formal analysis, Writing – original draft

  Affiliation Department of Epidemiology and Data Science, Evaluative Epidemiology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy

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