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      European Reference Network for rare adult solid cancers, statement and integration to health care systems of member states: a position paper of the ERN EURACAN

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          Bone sarcomas: ESMO–PaedCan–EURACAN Clinical Practice Guidelines for diagnosis, treatment and follow-up†

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            Rare cancers are not so rare: The rare cancer burden in Europe

            Epidemiologic information on rare cancers is scarce. The project Surveillance of Rare Cancers in Europe (RARECARE) provides estimates of the incidence, prevalence and survival of rare cancers in Europe based on a new and comprehensive list of these diseases. RARECARE analysed population-based cancer registry (CR) data on European patients diagnosed from 1988 to 2002, with vital status information available up to 31st December 2003 (latest date for which most CRs had verified data). The mean population covered was about 162,000,000. Cancer incidence and survival rates for 1995-2002 and prevalence at 1st January 2003 were estimated. Based on the RARECARE definition (incidence <6/100,000/year), the estimated annual incidence rate of all rare cancers in Europe was about 108 per 100,000, corresponding to 541,000 new diagnoses annually or 22% of all cancer diagnoses. Five-year relative survival was on average worse for rare cancers (47%) than common cancers (65%). About 4,300,000 patients are living today in the European Union with a diagnosis of a rare cancer, 24% of the total cancer prevalence. Our estimates of the rare cancer burden in Europe provide the first indication of the size of the public health problem due to these diseases and constitute a useful base for further research. Centres of excellence for rare cancers or groups of rare cancers could provide the necessary organisational structure and critical mass for carrying out clinical trials and developing alternative approaches to clinical experimentation for these cancers. Copyright © 2011 Elsevier Ltd. All rights reserved.
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              Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study

              Rare cancers pose challenges for diagnosis, treatments, and clinical decision making. Information about rare cancers is scant. The RARECARE project defined rare cancers as those with an annual incidence of less than six per 100 000 people in European Union (EU). We updated the estimates of the burden of rare cancers in Europe, their time trends in incidence and survival, and provide information about centralisation of treatments in seven European countries.
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                Author and article information

                Contributors
                Journal
                ESMO Open
                ESMO Open
                ESMO Open
                Elsevier
                2059-7029
                15 June 2021
                August 2021
                15 June 2021
                : 6
                : 4
                : 100174
                Affiliations
                [1 ]Department of Medical Oncology, Centre Leon Berard & Centre de Recherche en Cancérologie de Lyon (CRCL) & Université Claude Bernard Lyon 1, Lyon, France
                [2 ]Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori and University of Milan, Milan, Italy
                [3 ]Neuroendocrine Cancer Unit, Royal Free Hospital, London, UK
                [4 ]Sorbonne Université, Inserm, CNRS, UMR S 1127, Institut du Cerveau, ICM, AP-HP, Hôpitaux Universitaires La Pitié Salpêtrière - Charles Foix, Service de Neurologie 2-Mazarin, Paris, France
                [5 ]Melanoma Patient Network Europe, OcuMel, Birmingham, UK
                [6 ]Department of Medical Oncology, University Medical Centre Groningen, Groningen, The Netherlands
                [7 ]Department of Comprehensive Cancer Care, Masaryk Memorial Cancer Institute, Brno, Czech Republic
                [8 ]Institute of Biomedicine of Sevilla (IBIS, HUVR, CSIC, Universidad de Sevilla), Virgen, Virgen del Rocío University Hospital, Seville, Spain
                [9 ]Salivary Gland Cancer, London, UK
                [10 ]Department of Medical Oncology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands
                [11 ]International Neuroendocrine Cancer Alliance, Boston, USA
                [12 ]Department of Oncology, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic
                [13 ]National Institute of Oncology, Budapest, Hungary
                [14 ]Oncology Department, Centro Hospitalar e Universitário Universitário do Porto, Porto, Portugal
                [15 ]Department of Chemotherapy, Clinic of Haematology and Oncology, North Estonia Medical Centre Foundation, Tallinn, Estonia
                [16 ]Medical Oncology Department, Institut Curie, Paris, France
                [17 ]Oncology Department, and Danish Centre for Particle Therapy, University Hospital, Aarhus, Denmark
                [18 ]Research and Innovation Department, Centre Léon Bérard, Lyon, France
                [19 ]Medical University of Graz, Graz, Austria
                [20 ]Department of Medical Oncology, Charing Cross Hospital Campus of Imperial College London, London, UK
                [21 ]Thyroid Cancer Alliance, Rotterdam, The Netherlands
                [22 ]Maria Skłodowska Curie Institute, Warsaw, Poland
                [23 ]Lithuanian University of Health Sciences, Department of Neurosurgery, Kaunas, Lithuania
                [24 ]Sarcoma Patient EuroNet
                [25 ]EURORDIS-Rare Diseases Europe (European Patient Organisation for Rare Diseases)
                Author notes
                [†]

                Jean-Yves Blay and Paolo Casali contributed equally.

                Article
                S2059-7029(21)00134-4 100174
                10.1016/j.esmoop.2021.100174
                8219752
                34139485
                c9a5c74c-a525-4367-93e3-a1f6e86f679f
                © 2021 The Authors

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

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