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1. Data quality in rare cancers registraton: The report of the RARECARE data quality study

Author

Trama, A., Marcos-Gragera, R., Perez, M. J. S., van der Zwan, J. M., Ardanaz, E., Bouchardy, C., Melchor, J. M., Martinez, C., Capocaccia, R., Vicentini, M., Siesling, S., Gatta, G., Zielonk, N., Van Eycken, E., Henau, K., Magi, M., Bouvier, A. M., Jooste, V., Faivre, J., Maynadie, M., Manivet, I., Comber, H., Deady, S., Bellu, F., Dal Cappello, T., Ferretti, S., Vercelli, M., Quaglia, A., Federico, M., Cirilli, C., Fusco, M., Michiara, M., Sgargi, P., Giacomin, A., Tumino, R., Cilia, S., Spata, E., Mangone, L., Cinzia, S., Falcini, F., Giorgetti, S., Piffer, S., Franchini, S., Crocetti, E., Caldarella, A., Tagliabue, G., Zambon, P., Fiore, A. R., Dei Tos, A. P., De Angelis, R., England, K., Gozdz, S., Mezyk, R., Zwierko, M., Bielska-Lasota, M., Slowinski, J., Primic-Zakelj, M., Skrlec, F., Mateos, A., Bidaurrazaga, J., Galceran, J., Diaz Garcia, J. M., Martinez-Garcia, C., Sanchez Perez, M. J., Adolfsson, J., Usel, M., Ess, S. M., Spitale, A., Bordoni, A., Konzelmann, I., Visser, O., Otter, R., and Health Technology & Services Research

Subjects
0301 basic medicine, Male, Cancer Research, medicine.medical_specialty, media_common.quotation_subject, Data quality registraton, Populaton-based cancer registry, Rare cancers, Europe, Female, Humans, Neoplasms, Rare Diseases, Data Accuracy, Registries, 03 medical and health sciences, 0302 clinical medicine, Data accuracy, medicine, Medical physics, Quality (business), media_common, ddc:613, Gynecology, business.industry, Cancer, General Medicine, medicine.disease, 22/4 OA procedure, 030104 developmental biology, Oncology, 030220 oncology & carcinogenesis, Data quality, business
Abstract

Purpose Rare cancers represent 22% of all tumors in Europe; however, the quality of the data of rare cancers may not be as good as the quality of data for common cancer. The project surveillance of rare cancers in Europe (RARECARE) had, among others, the objective of assessing rare cancer data quality in population-based cancer registries (CRs). Eight rare cancers were considered: mesothelioma, liver angiosarcoma, sarcomas, tumors of oral cavity, CNS tumors, germ cell tumors, leukemia, and malignant digestive endocrine tumors. Methods We selected data on 18,000 diagnoses and revised, on the basis of the pathologic and clinical reports (but not on pathologic specimens), unspecified morphology and topography codes originally attributed by CR officers and checked the quality of follow-up of long-term survivors of poor prognosis cancers. Results A total of 38 CRs contributed from 13 European countries. The majority of unspecified morphology and topography cases were confirmed as unspecified. The few unspecified cases that, after the review, changed to a more specific diagnosis increased the incidence of the common cancer histotypes. For example, 11% of the oral cavity epithelial cancers were reclassified from unspecified to more specific diagnoses: 8% were reclassified as squamous cell carcinoma (commoner) and only 1% as adenocarcinoma (rarer). The revision confirmed the majority of long-term survivors revealing a relative high proportion of mesothelioma long-term survivors. The majority of appendix carcinoids changed behavior from malignant to borderline lesions. Conclusions Our study suggests that the problem of poorly specified morphology and topography cases is mainly one of difficulty in reaching a precise diagnosis. The awareness of the importance of data quality for rare cancers should increase among registrars, pathologists, and clinicians.

Published
2017

3. Descriptive epidemiology of Kaposi sarcoma in Europe. Report from the RARECARE project

Author

Stiller, C. A, Trama, A., Brewster, D. H., Verne, J., Bouchardy, C., Navarro, C., Chirlaque, M. D., Marcos Gragera, R., Visser, O., Serraino, D., Weiderpass, E., Dei Tos, A. P., Ascoli, V., Zielonk, N., Van Eycken, E., Sundseth, H., Hedelin, G., Bouvier, A. M., Woronoff, A. S., Buemi, A., Tretarre, B., Colonna, M., Bara, S., Ganry, O., Grosclaude, P., Baconnier, S., Holleczek, B., Geissler, J., Wartenberg, M., Tryggvadottir, L., Deady, S., Bellu, F., Ferretti, Stefano, Vercelli, M., Vitarelli, S., Federico, M., Fusco, M., Michiara, M., Giacomin, A., Tumino, R., Mangone, L., Falcini, F., Senatore, G., Budroni, M., Piffer, S., Crocetti, E., La Rosa, F., Tagliabue, G., Zambon, P., Gatta, G., Gronchi, A., Licitra, L., Ruzza, M., Sowe, S., Capocaccia, R., De Angelis, R., Mallone, S., Tavilla, A., England, K., Ursin, G., Rachtan, J., Gozdz, S., Zwierko, M., Bielska Lasota, M., Slowinski, J., Miranda, A., Safaei Diba, C., Primic Zakelj, M., Mateos, A., Bidaurrazaga, J., Torrella Ramos, A., Ardanaz, E., Galceran, J., Martinez Garcia, C., Sanchez Perez, M. J., Melchor, J. M., Adolfsson, J., Lambe, M., Möller, T. R., Ringborg, U., Jundt, G., Usel, M., Ess, S. M., Spitale, A., Konzelmann, I., Lutz, J. M., Coebergh, J. W. W., Otter, R., Siesling, S., van der Zwan, J. M., Schouten, H., Greenberg, D. C., Wilkinson, J., Roche, M., Meechan, D., Lawrence, G., Mackay, J., Gavin, A., Kunkler, I., and White, C.

Subjects
Adult, Male, Pediatrics, medicine.medical_specialty, Cancer Research, Survival, Epidemiology, Population, Socio-culturale, Kaposi, Bone Sarcoma, Acquired immunodeficiency syndrome (AIDS), medicine, Prevalence, Humans, Rare cancers, education, Sarcoma, Kaposi, ddc:613, Aged, Population-based study, education.field_of_study, Europe, Incidence, Kaposi sarcoma, Female, Middle Aged, Survival Analysis, Oncology, Medicine (all), Classic Kaposi Sarcoma, Relative survival, business.industry, Incidence (epidemiology), Cancer, Sarcoma, medicine.disease, Surgery, business
Abstract

Kaposi sarcoma (KS) is a virus-related malignancy which most frequently arises in skin, though visceral sites can also be involved. Infection with Kaposi sarcoma herpes virus (KSHV or HHV-8) is required for development of KS. Nowadays, most cases worldwide occur in persons who are immunosuppressed, usually because of HIV infection or as a result of therapy to combat rejection of a transplanted organ, but classic Kaposi sarcoma is predominantly a disease of the elderly without apparent immunosuppression. We analyzed 2667 KS incident cases diagnosed during 1995-2002 and registered by 75 population-based European cancer registries contributing to the RARECARE project. Total crude and age-standardized incidence rate was 0.3 per 100,000 per year with an estimated 1642 new cases per year in the EU27 countries. Age-standardized incidence rate was 0.8 per 100,000 in Southern Europe but below 0.3 per 100,000 in all other regions. The elevated rate in southern Europe was attributable to a combination of classic Kaposi sarcoma in some Mediterranean countries and the relatively high incidence of AIDS in several countries. Five-year relative survival for 2000-2002 by the period method was 75%. More than 10,000 persons were estimated to be alive in Europe at the beginning of 2008 with a past diagnosis of KS. The aetiological link with suppressed immunity means that many people alive following diagnosis of KS suffer comorbidity from a pre-existing condition. While KS is a rare cancer, it has a relatively good prognosis and so the number of people affected by it is quite large. Thus it provides a notable example of the importance of networking in diagnosis, therapy and research for rare cancers.

Published
2014

4. Rare neuroendocrine tumours: Results of the surveillance of rare cancers in Europe project

Author

Van Der Zwan, Jan Maarten, Trama, Annalisa, Otter, Renã©e, Larraã±aga, Nerea, Tavilla, Andrea, Marcos-gragera, Rafael, Dei Tos, Angelo Paolo, Baudin, Eric, Poston, Graeme, Links, Thera, Zielonke, N., Van Eycken, E., Sundseth, H., Hedelin, G., Faivre, JULIEN YVES STEPHAN, Woronoff, A. S., Buemi, A., Tretarre, B., Colonna, Marco, Bara, S., Ganry, O., Grosclaude, P., Holleczek, B., Geissler, J., Tryggvadottir, L., Deady, S., Bellã¹, F., Ferretti, Silvia, Serraino, D., Vercelli, M., Vitarelli, S., Cirilli, C., Fusco, M., Traina, Angelo, Michiara, M., Giacomin, A., Tumino, R., Mangone, L., Falcini, F., Senatore, G., Budroni, M., Piffer, S., Crocetti, E., LA ROSA, FEDERICA IRENE, Contiero, P., Fiore, A., Gatta, G., Casali, P. G., Gronchi, A., Ruzza, Marta, Sowe, S., De Angelis, R., Dei Tos, A. P., England, K., Ursin, G., Rachtan, J., Gozdz, S., Zwierko, M., Slowinski, J., Miranda, A., Safaei Diba, C., Primic-zakelj, M., Mateos, A., Martã­nez, R., Torrella-ramos, A., Osca-gelis, G., Chirlaque, M. D., Moreno, C., Galceran, J., Martinez-garcia, C., Melchor, J. M., Sã¡nchez, M. J., Virizuela-echaburu, J. A., Cervantes, A., Adolfsson, J., Lambe, M., Mã¶ller, T. R., Ringborg, U., Jundt, G., Bouchardy, C., Ess, S. M., Bordoni, A., Konzelmann, I., Lutz, J. M., Visser, O., Siesling, S., Coebergh, J. W. W., Greenberg, D. C., Wilkinson, Robert John Duncan, Roche, M., Verne, J., Meechan, D., Lawrence, G., Coleman, M. P., Mackay, J., Gavin, A., Brewster, D. H., Kunkler, I., White, C., Damage and Repair in Cancer Development and Cancer Treatment (DARE), Guided Treatment in Optimal Selected Cancer Patients (GUTS), and Bouchardy Magnin, Christine

Subjects
Male, Pediatrics, Pathology, Cancer Research, MEDULLARY-THYROID CARCINOMA, Survival, Rare Diseases/epidemiology/mortality, Neuroendocrine Tumors/epidemiology/mortality, PROGNOSTIC-FACTORS, MERKEL CELL-CARCINOMA, Prevalence, EPIDEMIOLOGY, Cancer registry, Incidence, Prevalence, Survival, Neuroendocrine, Registries, Child, education.field_of_study, Relative survival, Merkel cell carcinoma, Incidence (epidemiology), Incidence, Middle Aged, Cancer registry, Europe, Neuroendocrine Tumors, Neuroendocrine, Oncology, Child, Preschool, Epidemiological Monitoring, Female, Adult, medicine.medical_specialty, Adolescent, Population, UNITED-STATES, DIAGNOSIS, Europe/epidemiology, NO, PERIOD ANALYSIS, Young Adult, Rare Diseases, Carcinoma, medicine, Rare neuroendocrine tumours, Humans, education, Survival analysis, ddc:613, Aged, business.industry, Infant, Newborn, Cancer, Infant, NATURAL-HISTORY, medicine.disease, Survival Analysis, STAGING-SYSTEMS, business
Abstract

Because of the low incidence, and limited opportunities for large patient volume experiences, there are very few relevant studies of neuroendocrine tumours (NETs).A large population-based database (including cancer patients diagnosed from 1978 to 2002 and registered in 76 population-based cancer registries [CRs]), provided by the project 'surveillance of rare cancers in Europe' (RARECARE) is used to describe the basic indicators of incidence, prevalence and survival of NETs, giving a unique overview on the burden of NETs in Europe. NETs at all cancer sites, excluding lung, were analysed in this study. In total over 20,000 incident cases of NETs were analysed and a data quality check upon specific NETs was performed. The overall incidence rate for NETs was 25/1,000,000 and was highest in patients aged 65 years and older with well differentiated endocrine carcinomas (non-functioning pancreatic and gastrointestinal) (40 per 1,000,000). We estimated that slightly more than 100,000 people were diagnosed with NETs and still alive in EU27 at the beginning of 2008. Overall, NETs had a 5 year relative survival of 50%; survival was low (12%) for poorly differentiated endocrine carcinoma, and relatively high (64%) for well differentiated carcinoma (not functioning of the pancreas and digestive organs). Within NETs, endocrine carcinoma of thyroid gland had the best 5-year relative survival (82%).Because of the complexity and number of the different disciplines involved with NETs (as they arise in many organs), a multidisciplinary approach delivered in highly qualified reference centres and an international network between those centres is recommended. (c) 2013 Elsevier Ltd. All rights reserved.

Published
2013

5. Invasive extramammary Paget's disease and the risk for secondary tumours in Europe

Author

Van Der Zwan, J. M., Siesling, S., Blokx, W. A. M., Pierie, J. P. E. N., Capocaccia, R., Hackl, M., Zielonk, N., Van Eycken, E., Verstreken, M., Geissler, Jan, Znor, A., Magi, M., Hakulinen, T., Hedelin, G., Velten, M., Tron, I., Le Gall, E., Launoy, G., Guizard, A. V., Faivre, J., Bouvier, A. M., Maynadiã©, M., Danzon, A., Buemi, A., Tretarre, B., Colonna, M., Moliniã©, F., Lacour, B., Desandes, E., Bara, S., Schvartz, C., Ganry, O., Grosclaude, P., Benhamou, E., Holleczek, B., Wartenberg, Markus, Tryggvadottir, L., Comber, H., Deady, S., Bellã¹, F., Giacomin, A., Pascucci, C., Ferretti, S., Serraino, D., Vercelli, M., Quaglia, A., Vitarelli, S., Federico, M., Cirilli, C., Fusco, M., Traina, A., Michiara, M., Bozzani, F., Pastore, G., Tumino, R., Mangone, L., Falcini, F., Foca, F., Senatore, G., Iannelli, A., Budroni, M., Rosso, S., Piffer, S., Franchini, S., Crocetti, E., Caldarella, A., La Rosa, F., Stracci, F., Contiero, P., Tagliabue, G., Zambon, P., Fiore, A., Berrino, F., Casali, P. G., Gatta, G., Licitra, L., Ruzza, M., Sowe, S., Trama, A., De Angelis, R., Mallone, S., Tavilla, A., Dei Tos, A. P., Fleming, J., England, K., Langmark, F., Bray, F., Rachtan, J., Mezyk, R., Zwierko, M., Bielska-Lasota, M., Slowinski, J., Miranda, A., Primic-Žakelj, M., Ondrusova, M., Mateos, A., Izarzugaza, I., Torella-Ramos, A., Zurriaga, O., Marcos-Gragera, R., Sã¡nchez, M. J., Navarro, C., Chirlaque, M. D., Ardanaz, Eva, Moreno, C., Peris-Bonet, R., Galceran, J., Virizuela-Echaburu, J. A., Gonzalez-Campora, R., Martinez-Garcia, C., Melchor, J. M., Klint, Ã. …., Talbã¤ck, M., Adolfsson, Jan, Lambe, M., Mã¶ller, T. R., Ringborg, Ulrik, Jundt, G., Usel, M., Bouchardy, C., Frick, H., Ess, S. M., Bordoni, A., Luthi, J. C., Dehler, S., Probst-Hensch, N. M., Lutz, J. M., Visser, O., Otter, R., Coebergh, J. W. W., Greenberg, D. C., Forman, D., Roche, M., Stiller, C., Verne, J., Meechan, D., Lawrence, G., Coleman, M. P., Gavin, A., Brewster, D. H., Black, R. J., Kunkler, I., Steward, J., and Faculty of Behavioural, Management and Social Sciences

Subjects
Male, Epidemiology, Paget Disease, Disease, Extramammary Paget's, Neoplasms, 80 and over, Medicine, Aged, 80 and over, Europe, Rare tumours, Second cancer risk, Adult, Aged, Female, Humans, Incidence, Middle Aged, Neoplasm Invasiveness, Neoplasms, Second Primary, Paget Disease, Extramammary, Prognosis, Risk, Survival Rate, Surgery, Oncology, IR-81781, METIS-284549, Relative survival, Incidence (epidemiology), General Medicine, Second primary cancer, Second Primary, Standardized rate, medicine.medical_specialty, Socio-culturale, Extramammary Paget's disease, Translational research [ONCOL 3], Survival rate, Invasive extramammary Paget's disease, business.industry, medicine.disease, Dermatology, Extramammary, risk for secondary tumours, business
Abstract

Item does not contain fulltext The aim of this study was to determine the incidence and survival of Extramammary Paget's disease (EMPD) and to describe the possible increased risk of tumours after EMPD. All invasive cases diagnosed between 1990 and 2002 were selected from the RARECARE database. Incidence was expressed in European standardized rates. Relative survival was calculated for the period 1995-1999, with a follow-up until 31st December 2003. Standardized incidence ratios of second primary tumours were calculated to reveal possible increased risk after EMPD. European age standardized Incidence of EMPD within Europe is 0.6 per 1000,000 person years. Five-year relative survival for invasive EMPD was 91.2% (95%CI; 83.5-95.4), 8.6 percent of the EMPD patients developed other malignancies. The highest increased risk of developing a second primary tumour was found in the first year of follow-up (SIR:2.0 95%CI; 1.3-2.9), living in the South European region (SIR:2.3 95%CI; 1.5-3.5) or being female (SIR:1.5 95%CI; 1.1-1.9). Female genital organs displayed greatest increased risk of developing a second primary tumour after EMPD (SIR:15,1 95%CI; 0.38-84.23). Due to the increased risk of a second primary tumour after EMPD a thorough search for other tumours during their follow-up is recommended. 01 maart 2012

Published
2012

6. Descriptive epidemiology of sarcomas in Europe: report from the RARECARE project

Author

Stiller, C. A., Trama, A., Serraino, D., Rossi, S., Navarro, C., Chirlaque, M. D., Zielonk, N., Van Eycken, E., Sundseth, H., Hedelin, G., Woronoff, A. S., Buemi, A., Tretarre, B., Colonna, M., Bara, S., Ganry, O., Grosclaude, P., Baconnier, S., Holleczek, B., Geissler, J., Wartenberg, M., Tryggvadottir, L., Deady, S., Bellã¹, F., Ferretti, S., Vercelli, M., Vitarelli, S., Federico, M., Fusco, M., Michiara, M., Giacomin, A., Tumino, R., Mangone, L., Falcini, F., Senatore, G., Budroni, M., Piffer, S., Crocetti, E., La, F., Contiero, P., Zambon, P., Gatta, G., Gronchi, A., Licitra, L., Ruzza, M., Sowe, S., Capocaccia, R., De Angelis, R., Mallone, S., Tavilla, A., Dei Tos, A. P., Malta, K., Norway, G., Rachtan, J., Gozdz, S., Zwierko, M., Bielska-Lasota, M., Slowinski, J., Miranda, A., Safaei Diba, C. h., Primic-Zakelj, M., Mateos, A., Izarzugaza, I., Torrella, A., Marcos, R., Ardanaz, Eva, Galceran, J., Martinez-Garcia, C., Sanchez Perez, M. J., Melchor, J. M., Cervantes, A., Adolfsson, Jan, Lambe, M., Ringborg, Ulrik, Jundt, G., Usel, M., Ess, S. M., Spitale, A., Konzelmann, I., Lutz, J. M., Visser, O., Coebergh, J. W. W., Otter, R., Siesling, S., van der Zwan, J. M., Schouten, H., Greenberg, D. C., Wilkinson, J., Roche, M., Verne, J., Meechan, D., Lawrence, G., Coleman, M. P., Mackay, J., Gavin, A., Brewster, D. H., Kunkler, I., White, C., and Mã¶ller, T. R.

Subjects
Adult, Male, Cancer Research, Survival, Adolescent, Gastrointestinal stromal tumour, Gastrointestinal Stromal Tumors, Socio-culturale, Bone Neoplasms, Bone sarcomas, Incidence, Prevalence, Rare cancers, Soft tissue sarcomas, Aged, Child, Child, Preschool, Europe, Female, Humans, Infant, Infant, Newborn, Middle Aged, SEER Program, Sarcoma, Oncology, Preschool, Newborn
Abstract

Sarcomas are a heterogeneous group of malignant neoplasms arising from mesenchymal cells which encompass dozens of histological types and can occur in virtually any anatomic site. They form one of the principal groups of rare cancers in Europe as defined in the RARECARE project. We analysed 45,568 incident cases diagnosed during 1995-2002 and registered by 76 population-based cancer registries. Total crude incidence was 5.6 per 100,000 per year with an estimated 27,908 new cases per year in the EU27 countries, of which 84% were soft tissue sarcomas and 14% were bone sarcomas. Gastrointestinal stromal tumours (GIST) were only widely recognised as an entity in the late 1990s and consequently were under-registered. Their true incidence is believed to be about 1.5 per 100,000. Age-standardised incidence of soft tissue sarcomas ranged from 3.3 per 100,000 in Eastern Europe to 4.7 per 100,000 in Northern Europe. About 280,000 persons were estimated to be alive at the beginning of 2003 with a past diagnosis of sarcoma, of which 83% were soft tissue sarcomas and 16% were bone sarcomas. Five-year relative survival for 2000-2002 by the period was 58% for soft tissue sarcomas and 62% for bone sarcomas. The diversity and rarity of sarcomas combined with the quite large number of people affected by them mean that they provide a classic example of the importance of networking in diagnosis, therapy and research for rare cancers.

Published
2011

7. Rare cancers are not so rare: the rare cancer burden in Europe

Author

Gatta, Gemma, Van Der Zwan, Jan Maarten, Casali, Paolo G., Siesling, Sabine, Dei Tos, Angelo Paolo, Kunkler, Ian, Otter, Renã©e, Licitra, Lisa, Mallone, Sandra, Tavilla, Andrea, Trama, Annalisa, Capocaccia, Riccardo, Hackl, M., Van Eycken, E., Schrijvers, D., Sundseth, H., Geissler, Jan, Marreaud, S., Audisio, R., Mã¤gi, M., Hedelin, G., Velten, M., Launoy, G., Guizard, A. V., Bouvier, A. M., Maynadiã©, M., Mercier, M., Buemi, A., Tretarre, B., Colonna, M., Moliniã©, F., Lacour, B., Schvartz, C., Ganry, O., Grosclaude, P., Benhamou, E., Grossgoupil, M., Coquard, I. R., Droz, J. P., Baconnier, S., Holleczek, B., Wartenberg, M., Hehlmann, R., Tryggvadottir, L., Deady, S., Bellã¹, F., Ferretti, S., Serraino, D., Vercelli, M., Vitarelli, S., Cirilli, C., Fusco, M., Traina, A., Michiara, M., Giacomin, A., Pastore, G., Tumino, R., Mangone, L., Falcini, F., Senatore, G., Budroni, M., Piffer, S., Crocetti, E., La Rosa, F., Contiero, P., Zambon, P., Berrino, F., Casali, P. G., Gatta, G., Gronchi, A., Licitra, L., Sowe, S., Trama, A., Capocaccia, R., De Angelis, R., Mallone, S., Tavilla, A., Dei Tos, A. P., Brandes, A. A., England, K., Langmark, F., Rachtan, J., Mezyk, R., Zwierko, M., Bielska-lasota, M., Slowinski, J., Miranda, A., Safaei Diba, Ch, Primic-zakelj, M., Mateos, A., Izarzugaza, I., Marcos-gragera, R., Sã¡nchez, M. J., Navarro, C., Ardanaz, Eva, Galceran, J., Virizuela-echaburu, J. A., Martinez-garcia, C., Melchor, J. M., Cervantes, A., Adolfsson, Jan, Lambe, M., Mã¶ller, T. R., Ringborg, Ulrik, Jundt, G., Usel, M., Frick, H., Ess, S. M., Bordoni, A., Konzelmann, I., Dehler, S., Lutz, J. M., Visser, O., Otter, R., Siesling, S., Van Der Zwan, J. M., Coebergh, J. W. W., Schouten, H., Greenberg, D. C., Wilkinson, J., Roche, M., Verne, J., Meechan, D., Lawrence, G., Coleman, M. P., Mackay, J., Gavin, A., Brewster, D. H., Kunkler, I., Steward, J., Evaluative Epidemiology Unit, Fondazione IRCCS, Comprehensive Cancer Centre North East, University of Twente [Netherlands], Cancer Research UK Edinburgh Centre [Edinburgh, UK], University of Edinburgh-MRC Institute of Genetics and Molecular Medicine [Edinburgh] (IGMM), University of Edinburgh-Medical Research Council-Medical Research Council, Integraal Kankercentrum Noord, National Centre for Epidemiology, Surveillance and Health Promotion, Istituto Superiore di Sanita [Rome], Fondazione IRCCS Istituto Nazionale dei Tumori, Faculty of Behavioural, Management and Social Sciences, and Usel, Massimo

Subjects
Male, Pediatrics, Cancer Research, Survival, Rare cancers, Europe, MESH: Registries, 0302 clinical medicine, MESH: Aged, 80 and over, Rare Diseases/epidemiology, Neoplasms, MESH: Child, Prevalence, Cancer registries, MESH: Neoplasms, Registries, MESH: Incidence, Child, media_common, Aged, 80 and over, MESH: Aged, 0303 health sciences, education.field_of_study, MESH: Middle Aged, Relative survival, Incidence (epidemiology), Incidence, MESH: Infant, Newborn, IR-78337, Middle Aged, MESH: Infant, 3. Good health, Oncology, MESH: Young Adult, 030220 oncology & carcinogenesis, Child, Preschool, MESH: Survival Analysis, Female, Adult, MESH: Rare Diseases, medicine.medical_specialty, Adolescent, Population, [SDV.CAN]Life Sciences [q-bio]/Cancer, Rare cancers, Cancer registries, Incidence, Prevalence, Survival, Europe/epidemiology, NO, 03 medical and health sciences, Young Adult, Rare Diseases, medicine, media_common.cataloged_instance, Humans, European union, education, Survival analysis, MESH: Prevalence, 030304 developmental biology, ddc:613, Aged, MESH: Adolescent, MESH: Humans, business.industry, Public health, MESH: Child, Preschool, Infant, Newborn, Cancer, Infant, MESH: Adult, medicine.disease, Survival Analysis, MESH: Male, Cancer registry, MESH: Europe, business, Neoplasms/epidemiology, MESH: Female
Abstract

International audience; PURPOSE: 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. MATERIALS AND METHODS: 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. RESULTS: Based on the RARECARE definition (incidence

Published
2011

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