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1. Clear Improvement in Real-World Chronic Myeloid Leukemia Survival: A Comparison With Randomized Controlled Trials

Author

Vener, C., Rossi, S., Minicozzi, P., Marcos-Gragera, R., Poirel, H. A., Maynadie, M., Troussard, X., Pravettoni, G., De Angelis, R., Sant, M., Hackl, M., Van Eycken, E., Valerianova, Z., Sekerija, M., Pavlou, P., Dusek, L., Storm, H., Magi, M., Innos, K., Malila, N., Pitkaniemi, J., Velten, M., Bouvier, A. M., Jooste, V., Guizard, A. V., Launoy, G., Yonli, S. D., Woronoff, A. S., Nousbaum, J. B., Coureau, G., Monnereau, A., Baldi, I., Hammas, K., Tretarre, B., Colonna, M., Plouvier, S., D'Almeida, T., Molinie, F., Cowppli-Bony, A., Bara, S., Schvartz, C., Defossez, G., Lapotre-Ledoux, B., Grosclaude, P., Luttmann, S., Stabenow, R., Nennecke, A., Kieschke, J., Zeissig, S., Holleczek, B., Katalinic, A., Birgisson, H., Murray, D., Walsh, P. M., Mazzoleni, G., Vittadello, F., Cuccaro, F., Galasso, R., Sampietro, G., Rosso, S., Magoni, M., Ferrante, M., Sardo, A. S., Gambino, M. L., Ballotari, P., Giacomazzi, E., Ferretti, S., Caldarella, A., Manneschi, G., Gatta, G., Baili, P., Berrino, F., Botta, L., Trama, A., Lillini, R., Bernasconi, A., Bonfarnuzzo, S., Didone, F., Lasalvia, P., Del Monego, G., Magri, M. C., Buratti, L., Serraino, D., Dal Maso, L., Capocaccia, R., Demuru, E., Di Benedetto, C., Santaquilani, M., Venanzi, S., Filiberti, R. A., Iacovacci, S., Gennaro, V., Russo, A. G., Spagnoli, G., D'Oro, L. C., Fusco, M., Vitale, M. F., Usala, M., Vitale, F., Michiara, M., Chiranda, G., Cascone, G., Spata, E., Mangone, L., Falcini, F., Cavallo, R., Piras, D., Madeddu, A., Bella, F., Fanetti, A. C., Minerba, S., Candela, G., Scuderi, T., Rizzello, R. V., Stracci, F., Tagliabue, G., Rugge, M., Brustolin, A., Pildava, S., Smailyte, G., Azzopardi, M., Johannesen, T. B., Didkowska, J., Wojciechowska, U., Bielska-Lasota, M., Pais, A., Pontes, J. L., Miranda, A., Diba, C. S., Zadnik, V., Zagar, T., Escudero, C. S. -C., Sureda, P. F., de Munain, A. L., De-La-cruz, M., Rojas, M. D., Aleman, A., Vizcaino, A., Sanchez, M. J., Chirlaque, M. D., Eslava, M. G., Ardanaz, E., Galceran, J., Carulla, M., Bergeron, Y., Bouchardy, C., Mousavi, S. M., Bordoni, A., Visser, O., Rashbass, J., Gavin, A., Morrison, D., and Huws, D. W.

Subjects
Cancer Research, Survival, real-world data, randomized controlled trials (RCTs), tyrosine kinase inhibitor (TKI), population-based studies, Tyrosine kinase inhibitor (TKI), Randomized controlled trials (RCTs), survival, Real-world data, Europe, Oncology, cancer registries, chronic myeloid leukemia (CML), Chronic myeloid leukemia (CML), Cancer registries, Population-based studies
Abstract

This study was funded by the Compagnia di San Paolo, the Cariplo Foundation and the European Commission (grant number 801520 HP-JA-2017, Innovative Partnership for Action Against Cancer, iPAAC Joint Action). The sources of the funding played no role in designing the study, collecting, analyzing, or interpreting the data, writing the report, or deciding whether or not to submit the article for publication. This research was (partially) funded by Italian Ministry of Health "Ricerca Corrente" funds. Tyrosine kinase inhibitors (TKIs) have been improving the prognosis of patients with chronic myeloid leukemia (CML), but there are still large differences in survival among European countries. This raises questions on the added value of results from population-based studies, which use real-world data, compared to results of randomized controlled trials (RCTs) involving patients with CML. There are also questions about the extent of the findings on RCTs effectiveness for patients in the general population. We compare survival data extracted from our previous systematic review and meta-analysis of CML RCTs with the latest updated population-based survival data of EUROCARE-6, the widest collaborative study on cancer survival in Europe. The EUROCARE-6 CML survival estimated in patients (15-64 years) diagnosed in 2000-2006 vs. 2007-2013 revealed that the prognostic improvement highlighted by RCTs was confirmed in real-world settings, too. The study shows, evaluating for the first time all European regions, that the optimal outcome figures obtained in controlled settings for CML are also achievable (and indeed achieved) in real-world settings with prompt introduction of TKIs in daily clinical practice. However, some differences still persist, particularly in Eastern European countries, where overall survival values are lower than elsewhere, probably due to a delayed introduction of TKIs. Our results suggest an insufficient adoption of adequate protocols in daily clinical practice in those countries where CML survival values remain lower in real life than the values obtained in RCTs. New high-resolution population-based studies may help to identify failures in the clinical pathways followed there.

Published
2022

2. Reasons for low cervical cancer survival in new accession European Union countries: a EUROCARE-5 study

Author

Bielska-Lasota, M., Rossi, S., Krzyzak, M., Haelens, A., Domenic, A., De Angelis, R., Maciejczyk, A., Rodriguez-Barranco, M., Zadnik, V., Minicozzi, P., Hackl, M., Ihle, P., Vaneycken, E., Henau, K., Valerianova, Z., Dimitrova, N., Sekerija, M., Cukelj, P., Dusek, L., Zvolsky, M., Magi, M., Aareleid, T., Malila, N., Seppa, K., Velten, M., Guizard, A. V., Faivre, J., Woronoff, A. S., Tretarre, B., Bossard, N., Uhry, Z., Colonna, M., Molinie, F., Cowppli-Bony, A., Bara, S., Lapotre-Ledoux, B., Grosclaude, P., Stabenow, R., Luttmann, S., Eberle, A., Brenner, H., Nennecke, A., Engel, J., Schubert-Fritschle, G., Heidrich, J., Holleczek, B., Katalinic, A., Birgisson, H., Tryggvadottir, L., Clough-Gorr, K., Mazzoleni, G., Bulatko, A., Buzzoni, C., Suterasardo, A., Mancuso, P., Ferretti, S., Barchielli, A., Caldarella, A., Gatta, G., Sant, M., Amati, C., Baili, P., Berrino, F., Bonfarnuzzo, S., Botta, L., Capocaccia, R., Foschi, R., Margutti, C., Meneghini, E., Trama, A., Serraino, D., Dalmaso, L., Deangelis, R., Dibenedetto, C., Caldora, M., Francisci, S., Galati, F., Mallone, S., Pierannunzio, D., Tallon, M., Santaquilani, M., Tavilla, A., Pannozzo, F., Busco, S., Filiberti, R. A., Marani, E., Ricci, P., Spagnoli, G., Cirilli, C., Fusco, M., Vitale, M. F., Usala, M., Vitale, F., Mazzucco, W., Michiara, M., Zanetti, R., Rosso, S., Tumino, R., Mangone, L., Difelice, E., Russo, A. G., Andreano, A., Falcini, F., Caiazzo, A. L., Cesaraccio, R., Piffer, S., Madeddu, A., Tisano, F., Fanetti, A. C., Cometti, I., Candela, P., Scuderi, T., Stracci, F., Bianconi, F., Tagliabue, G., Contiero, P., Rugge, M., Zorzi, M., Pildava, S., Smailyte, G., Azzopardi, M., Calleja, N., Johannesen, T. B., Rachtan, J., Gozdz, S., Macek, P., Blaszczyk, J., Bebenek, M., Forjaz deLacerda, G., Bento, M. J., Antunes, L., Miranda, A., Mayer-da-Silva, A., Safaeidiba, C., Primic-Zakelj, M., Lopez deMunain, A., Gil, L., Diazgarcia, J. M., Marcos-Navarro, A. I., Marcos-Gragera, R., Puigdemont, M., Sanchez, M. J., Chang, D. Y. L., Chirlaque, M. D., Ardanaz, E., Guevara, M., Galceran, J., Carulla, M., Lambe, M., Khan, S., Staehelin, K., Bouchardy, C., Fournier, E., Mousavi, S. M., Ess, S. M., Lorez, M., Mousavi, M., Herrmann, C., Bordoni, A., Spitale, A., Konzelmann, I., Visser, O., Aarts, M., Otter, R., Coleman, M., Allemani, C., Rachet, B., Rashbass, J., Broggio, J., Verne, J., Gavin, A., Donnelly, D., Morrison, D., Black, R., Huws, D. W., Thomas, R., Bielska‑Lasota, M, Rossi, S, Krzyżak, M, Haelens, A, Domenic, A, De Angelis, R, Maciejczyk, A, Rodríguez‑Barranco, M, Zadnik, V, Minicozzi, P, Vitale, F, and Mazzucco, W

Subjects
Morphology, Adult, Male, Stage at diagnosi, Survival, Adolescent, Socio-culturale, Uterine Cervical Neoplasms, Disease, Settore MED/42 - Igiene Generale E Applicata, 03 medical and health sciences, 0302 clinical medicine, Medicine, media_common.cataloged_instance, Humans, European Union, European union, Survival rate, Population-based study, media_common, Aged, Retrospective Studies, Cervical cancer, Aged, 80 and over, Cervical cancer, Europe, Morphology, Population-based study, Stage at diagnosis, Survival, 030219 obstetrics & reproductive medicine, Relative survival, business.industry, Absolute risk reduction, Obstetrics and Gynecology, Retrospective cohort study, Stage at diagnosis, General Medicine, Middle Aged, medicine.disease, Europe, Eastern european, Survival Rate, 030220 oncology & carcinogenesis, Female, business, Demography
Abstract

Purpose: With better access to early diagnosis and appropriate treatment, cervical cancer (CC) burden decreased in several European countries. In Eastern European (EE) countries, which accessed European Union in 2004, CC survival was worse than in the rest of Europe. The present study investigates CC survival differences across five European regions, considering stage at diagnosis (local, regional and metastatic), morphology (mainly squamous versus glandular tumours) and patients’ age. Methods: We analysed 101,714 CC women diagnosed in 2000–2007 and followed-up to December 2008. Age-standardised 5-year relative survival (RS) and the excess risks of cancer death in the 5years after diagnosis were computed. Results: EE women were older and less commonly diagnosed with glandular tumours. Proportions of local stage cancers were similar across Europe, while morphology- and stage-specific RS (especially for non-metastatic disease) were lower in Eastern Europe. Adjusting for age and morphology, excess risk of local stage CC death for EE patients remained higher than that for other European women. Conclusion: Stage, age and morphology alone do not explain worse survival in Eastern Europe: less effective care may play a role, probably partly due to fewer or inadequate resources being allocated to health care in this area, compared to the rest of Europe.

Published
2019

3. Geographical variability in survival of European children with central nervous system tumours

Author

Storm, H., Engholm, G., Mã¤gi, M., Aareleid, T., Bossard, N., Uhry, Z., Brenner, H., Comber, H., Buzzoni, C., Gatta, G., Sant, M., Amash, H., Amati, C., Baili, P., Berrino, F., Bonfarnuzzo, S., Botta, L., Capocaccia, R., Di Salvo, F., Foschi, R., Margutti, C., Meneghini, E., Minicozzi, P., Trama, A., Tagliabue, G., Contiero, P., Serraino, D., Zucchetto, A., De Angelis, R., Caldora, M., Carrani, E., Francisci, S., Mallone, S., Pierannunzio, D., Roazzi, P., Rossi, S., Santaquilani, M., Tavilla, A., Piffer, S., Calleja, N., Agius, D., Bielska-Lasota, M., Primic-Zakelj, M., Peris-Bonet, R., Pardo Romaguera, E., Lambe, M., Coleman, M., Allemani, C., Rachet, B., Stiller, C., Visser, O., Marcos-Gragera, R., Sã¡nchez, M. -. J., Lacour, B., Kaatsch, P., Rutkowsky, S., Hackl, M., Zielonke, N., Oberaigner, W., Van Eycken, E., Henau, K., Valerianova, Z., Dimitrova, N., Sekerija, M., Malila, N., Seppã¤, K., Faivre, J., Colonna, M., Clavel, J., Desandes, E., Katalinic, A., Garami, M., Jakab, Z., Mazzoleni, G., Bulatko, A., Giacomin, A., Sutera Sardo, A., Mancuso, P., Ferretti, S., Barchielli, A., Caldarella, A., Pannozzo, F., Busco, S., Filiberti, R. A., Marani, E., Ricci, P., Pascucci, C., Autelitano, M., Spagnoli, G., Cirilli, C., Fusco, M., Vitale, M. F., Usala, M., Vitale, F., Ravazzolo, B., Michiara, M., Merletti, F., Maule, M., Tumino, R., Mangone, L., Di Felice, E., Falcini, F., Iannelli, A., Sechi, O., Cesaraccio, R., Madeddu, A., Tisano, F., Maspero, S., Fanetti, A. C., Candela, P., Scuderi, T., Stracci, F., Bianconi, F., Rugge, M., Guzzinati, S., Pildava, S., Smailyte, G., Johannesen, T. B., Rachtan, J., Gã³åºdåº, S., Mężyk, R., BÅ‚aszczyk, J., BÄ™benek, M., Forjaz de Lacerda, G., Bento, M. J., Castro, C., Miranda, A., Mayer-da-Silva, A., Safaei Diba, C., Errezola, M., Bidaurrazaga, J., Vicente Raneda, M., Díaz García, J. M., Marcos-Navarro, A. I., Izquierdo Font, A., Sanchez, M. J., Chang, D. Y. L., Navarro, C., Chirlaque, M. D., Moreno-Iribas, C., Ardanaz, E., Galceran, J., Carulla, M., Mousavi, M., Bouchardy, C., Usel, M., Ess, S. M., Frick, H., Lorez, M., Herrmann, C., Bordoni, A., Spitale, A., Konzelmann, I., Aarts, M., Otter, R., Verne, J., Gavin, A., Donnelly, C., Brewster, D. H., Storm H., Engholm G., Magi M., Aareleid T., Bossard N., Uhry Z., Brenner H., Comber H., Buzzoni C., Gatta G., Sant M., Amash H., Amati C., Baili P., Berrino F., Bonfarnuzzo S., Botta L., Capocaccia R., Di Salvo F., Foschi R., Margutti C., Meneghini E., Minicozzi P., Trama A., Tagliabue G., Contiero P., Serraino D., Zucchetto A., De Angelis R., Caldora M., Carrani E., Francisci S., Mallone S., Pierannunzio D., Roazzi P., Rossi S., Santaquilani M., Tavilla A., Piffer S., Calleja N., Agius D., Bielska-Lasota M., Primic-Zakelj M., Peris-Bonet R., Pardo Romaguera E., Lambe M., Coleman M., Allemani C., Rachet B., Stiller C., Visser O., Marcos-Gragera R., Sanchez M.-J., Lacour B., Kaatsch P., Rutkowsky S., Hackl M., Zielonke N., Oberaigner W., Van Eycken E., Henau K., Valerianova Z., Dimitrova N., Sekerija M., Malila N., Seppa K., Faivre J., Colonna M., Clavel J., Desandes E., Katalinic A., Garami M., Jakab Z., Mazzoleni G., Giacomin A., Sutera Sardo A., Mancuso P., Ferretti S., Barchielli A., Caldarella A., Pannozzo F., Busco S., Filiberti R.A., Marani E., Ricci P., Pascucci C., Autelitano M., Spagnoli G., Cirilli C., Fusco M., Vitale M.F., Usala M., Vitale F., Ravazzolo B., Michiara M., Merletti F., Maule M., Tumino R., Mangone L., Di Felice E., Falcini F., Iannelli A., Sechi O., Cesaraccio R., Madeddu A., Tisano F., Maspero S., Fanetti A.C., Candela P., Scuderi T., Stracci F., Bianconi F., Rugge M., Guzzinati S., Pildava S., Smailyte G., Johannesen T.B., Rachtan J., Gozdz S., Mezyk R., Blaszczyk J., Bebenek M., Forjaz de Lacerda G., Bento M.J., Castro C., Miranda A., Mayer-da-Silva A., Safaei Diba C., Errezola M., Bidaurrazaga J., Vicente Raneda M., Diaz Garcia J.M., Marcos-Navarro A.I., Izquierdo Font A., Sanchez M.J., Chang D.Y.L., Navarro C., Chirlaque M.D., Moreno-Iribas C., Ardanaz E., Galceran J., Carulla M., Mousavi M., Bouchardy C., Usel M., Ess S.M., Frick H., Lorez M., Herrmann C., Bordoni A., Spitale A., Konzelmann I., Aarts M., Otter R., Verne J., Gavin A., Donnelly C., and Brewster D.H.

Subjects
0301 basic medicine, Male, Cancer Research, Pediatrics, medicine.medical_specialty, Childhood cancer survival, Europe, Population-based cancer registries, Disparities, Central nervous system, Adolescent, Population, Population-based cancer registrie, Socio-culturale, Disparities, Central Nervous System Neoplasms, 03 medical and health sciences, 0302 clinical medicine, Epidemiology of cancer, Childhood cancer survival, Medicine, Humans, Preschool, education, Child, Grading (tumors), Survival rate, Survival analysis, education.field_of_study, business.industry, Proportional hazards model, Incidence, Hazard ratio, Central Nervous System Neoplasm, Infant, Population-based cancer registries, Disparitie, Survival Analysis, Europe, 030104 developmental biology, Oncology, Central nervous system, 030220 oncology & carcinogenesis, Child, Preschool, Female, Death certificate, business, Human
Abstract

Survival for childhood central nervous system (CNS) tumours varies across Europe, partly because of the difficulty of distinguishing malignant from non-malignant disease. This study examines bias in CNS tumours survival analysis to obtain the reliable and comparable survival figures. We analysed survival data for about 15, 000 children (age

Published
2017

4. Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE--5-a population-based study

Author

De Angelis R, Sant M, Coleman, Mp, Francisci, S, Baili, P, Pierannunzio, D, Trama, A, Visser, O, Brenner, H, Ardanaz, E, Bielska Lasota, M, Engholm, G, Nennecke, A, Siesling, S, Berrino, F, Capocaccia R. Hackl, M, Zielonke, N, Oberaigner, W, Henau, K, Van Eycken, E, Dimitrova, N, Valerianova, Z, Znaor, A, Dušek, L, Zvolský, M, Storm, H, Mägi, M, Aareleid, T, Malila, N, Seppä, K, Velten, M, Belot, A, Troussard, X, Launoy, G, Guizard, A, Bouvier, A, Faivre, J, Arveux, P, Maynadié, M, Woronoff, A, Robaszkiewicz, M, Baldi, I, Monnereau, A, Tretarre, B, Bossard, N, Estève, J, Colonna, M, Molinié, F, Bara, S, Schvartz, C, Lapôtre Ledoux, B, Grosclaude, P, Meyer, M, Stabenow, R, Eberle, A, Luttmann, S, Engel, J, Schubert Fritschle, G, Kieschke, J, Batzler, W, Holleczek, B, Katalinic, A, Jónasson, J, Tryggvadóttir, L, Comber, H, Bulatko, A, Mazzoleni, G, Buzzoni, C, Giacomin, A, Mancuso, P, Sardo, A, Ferretti, S, Caldarella, A, Crocetti, E, Amati, C, Bonfarnuzzo, S, Botta, L, Foschi, R, Gatta, G, Margutti, C, Minicozzi, P, Sant, M, Tereanu, C, Dal Maso, L, Serraino, D, Caldora, M, Capocaccia, R, Carrani, E, De Angelis, R, Mallone, S, Roazzi, P, Rossi, S, Santaquilani, M, Tavilla, A, Busco, S, Pannozzo, F, Quaglia, A, Vercelli, M, Gennaro, V, Ricci, P, Bisanti, L, Randi, G, PONZ DE LEON, Maurizio, Federico, Massimo, Fusco, M, Vitale, M, Usala, M, Traina, A, Zarcone, M, Cusimano, R, Vitale, F, Michiara, M, Tumino, R, Di Felice, E, Rossi, P, Falcini, F, Iannelli, A, Budroni, M, Sechi, O, Piffer, S, Madeddu, A, Tisano, F, Fanetti, A, Tessandori, R, Rosso, S, Zanetti, R, Candela, P, Scuderi, T, Bianconi, F, La Rosa, F, Contiero, P, Tagliabue, G, Guzzinati, S, Zambon, P, Pildava, S, Smailyte, G, Agius, D, Micallef, R, Johannesen, T, Góźdź, S, Mężyk, R, Rachtan, J, Bębenek, M, Błaszczyk, J, Forjaz de Lacerda, G, Antunes, L, Bento, M, Mayer da Silva, A, Miranda, A, Coza, D, Nicula, F, Diba, C, Primic Zakelj, M, Almar, E, Mateos, A, Bidaurrazaga, J, Larrañaga, N, Torrella Ramos, A, Díaz García, J, Jimenez Chillaron, R, Izquierdo Font, A, Marcos Gragera, R, Martinez, C, Sanchez, M, Chirlaque, M, Navarro, C, Moreno Iribas, C, García, S, Peris Bonet, R, Carulla, M, Galceran, J, Khan, S, Lambe, M, Jundt, G, Bouchardy, C, Usel, M, Frick, H, Lorez, M, Ess, S, Herrmann, C, Bordoni, A, Spitale, A, Konzelmann, I, Lutz, J, Coebergh, J, Lemmens, V, Aben, K, Otter, R, Allemani, C, Coleman, M, Rachet, B, Davies, E, Easey, N, Lawrence, G, Meechan, D, Moran, T, Rashbass, J, Roche, M, Verne, J, Wilkinson, J, Bannon, F, Gavin, A, Brewster, D, Reynolds, S., Faculty of Behavioural, Management and Social Sciences, De Angelis, R, Sant, M, Coleman, M, Francisci, S, Baili, P, Pierannunzio, D, Trama, A, Visser, O, Brenner, H, Ardanaz, E, Bielska Lasota, M, Engholm, G, Nennecke, A, Siesling, S, Berrino, F, Capocaccia, R, Vitale, F., Bouchardy Magnin, Christine, and Usel, Massimo

Subjects
Gerontology, Adult, Male, Time Factors, Adolescent, Colorectal cancer, Population, Settore MED/42 - Igiene Generale E Applicata, IR-88481, NO, Prostate cancer, Breast cancer, METIS-300341, Neoplasms, medicine, Humans, Lung cancer, education, Age Factors, Aged, Europe, Female, Middle Aged, Retrospective Studies, ddc:613, education.field_of_study, Relative survival, business.industry, Oncology, cancer survival, eurocare, Cancer, Retrospective cohort study, cancer survival, age, country, Eurocare 5, medicine.disease, Cancer survival, Oncology, Neoplasms/mortality, business, Demography
Abstract

Background: Cancer survival is a key measure of the effectiveness of health-care systems. EUROCARE-the largest cooperative study of population-based cancer survival in Europe-has shown persistent differences between countries for cancer survival, although in general, cancer survival is improving. Major changes in cancer diagnosis, treatment, and rehabilitation occurred in the early 2000s. EUROCARE-5 assesses their effect on cancer survival in 29 European countries. Methods: In this retrospective observational study, we analysed data from 107 cancer registries for more than 10 million patients with cancer diagnosed up to 2007 and followed up to 2008. Uniform quality control procedures were applied to all datasets. For patients diagnosed 2000-07, we calculated 5-year relative survival for 46 cancers weighted by age and country. We also calculated country-specific and age-specific survival for ten common cancers, together with survival differences between time periods (for 1999-2001, 2002-04, and 2005-07). Findings: 5-year relative survival generally increased steadily over time for all European regions. The largest increases from 1999-2001 to 2005-07 were for prostate cancer (73·4% [95% CI 72·9-73·9] vs 81·7% [81·3-82·1]), non-Hodgkin lymphoma (53·8% [53·3-54·4] vs 60·4% [60·0-60·9]), and rectal cancer (52·1% [51·6-52·6] vs 57·6% [57·1-58·1]). Survival in eastern Europe was generally low and below the European mean, particularly for cancers with good or intermediate prognosis. Survival was highest for northern, central, and southern Europe. Survival in the UK and Ireland was intermediate for rectal cancer, breast cancer, prostate cancer, skin melanoma, and non-Hodgkin lymphoma, but low for kidney, stomach, ovarian, colon, and lung cancers. Survival for lung cancer in the UK and Ireland was much lower than for other regions for all periods, although results for lung cancer in some regions (central and eastern Europe) might be affected by overestimation. Survival usually decreased with age, although to different degrees depending on region and cancer type. Interpretation: The major advances in cancer management that occurred up to 2007 seem to have resulted in improved survival in Europe. Likely explanations of differences in survival between countries include: differences in stage at diagnosis and accessibility to good care, different diagnostic intensity and screening approaches, and differences in cancer biology. Variations in socioeconomic, lifestyle, and general health between populations might also have a role. Further studies are needed to fully interpret these findings and how to remedy disparities. Funding: Italian Ministry of Health, European Commission, Compagnia di San Paolo Foundation, Cariplo Foundation. © 2014 Elsevier Ltd.

Published
2014

5. Testicular germ-cell tumours and penile squamous cell carcinoma: Appropriate management makes the difference

Author

Nicola Nicolai, Davide Biasoni, Mario A. Catanzaro, Maurizio Colecchia, Annalisa Trama, Monika Hackl, Elizabeth Van Eycken, Kris Henau, Nadya Dimitrova, Mario Sekerija, Ladislav Dušek, Margit Mägi, Nea Malila, Maarit Leinonen, Michel Velten, Xavier Troussard, Veronique Bouvier, Anne-Valérie Guizard, Anne-Marie Bouvier, Patrick Arveux, Marc Maynadié, Anne-Sophie Woronoff, Michel Robaszkiewic, Isabelle Baldi, Alain Monnereau, Brigitte Tretarre, Marc Colonna, Florence Molinié, Simona Bara, Claire Schvartz, Bénédicte Lapôtre-Ledoux, Pascale Grosclaude, Roland Stabenow, Sabine Luttmann, Alice Nennecke, Jutta Engel, Gabriele Schubert-Fritschle, Jan Heidrich, Bernd Holleczek, Jón Gunnlaugur Jónasson, Kerri Clough-Gorr, Harry Comber, Guido Mazzoleni, Adriano Giacomin, Antonella Sutera Sardo, Alessandr Barchielli, Diego Serraino, Roberta De Angelis, Sandra Mallone, Andrea Tavilla, Daniela Pierannunzio, Silvia Rossi, Mariano Santaquilani, Arnold Knijn, Fabio Pannozzo, Valerio Gennaro, Lucia Benfatto, Paolo Ricci, Mariangela Autelitano, Gianbattista Spagnoli, Mario Fusco, Mario Usala, Francesco Vitale, Maria Michiara, Rosario Tumino, Lucia Mangone, Fabio Falcini, Stefano Ferretti, Rosa Angela Filiberti, Enza Marani, Arturo Iannelli, Flavio Sensi, Silvano Piffer, Maria Gentilini, Anselmo Madeddu, Antonio Ziino, Sergio Maspero, Pina Candela, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Gemma Gatta, Laura Botta, Riccardo Capocaccia, Santa Pildava, Giedre Smailyte, Neville Calleja, Tom Børge Johannesen, Jadwiga Rachtan, Stanisław Góźdź, Jerzy Błaszczyk, Kamila Kępska, Gonçalo Forjaz de Lacerda, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Enrique Almar, Nerea Larrañaga, Arantza Lopez de Munain, Ana Torrella-Ramos, José María Díaz García, Rafael Marcos-Gragera, Maria Josè Sanchez, Carmen Navarro, Diego Salmeron, Conchi Moreno-Iribas, Jaume Galceran, Marià Carulla, Mohsen Mousavi, Christine Bouchardy, Silvia M. Ess, Andrea Bordoni, Isabelle Konzelmann, Jem Rashbass, Anna Gavin, David H. Brewster, Dyfed Wyn Huws, Otto Visser, Magdalena Bielska-Lasota, Maja Primic-Zakelj, Ian Kunkler, Ellen Benhamou, Nicolai N., Biasoni D., Catanzaro M.A., Colecchia M., Trama A., Hackl M., Eycken E.V., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewic M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sutera Sardo A., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Gatta G., Botta L., Capocaccia R., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda G.F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., M. Ess S., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., Benhamou E., Nicolai, N, Biasoni, D, Catanzaro, Ma, Colecchia, M, Trama, A, Hackl, M, Van Eycken, E, Henau, K, Dimitrova, N, Sekerija, M, Dusek, L, Maagi, M, Malila, N, Leinonen, M, Velten, M, Troussard, X, Bouvier, V, Guizard, Av, Bouvier, Am, Arveux, P, Maynadie, M, Woronoff, A, Robaszkiewicz, M, Baldi, I, Monnereau, A, Tretarre, B, Colonna, M, Molinie, F, Bara, S, Schvartz, C, Lapotre-Ledoux, B, Grosclaude, P, Stabenow, R, Luttmann, S, Nennecke, A, Engel, J, Schubert-Fritschle, G, Heidrich, J, Holleczek, B, Jonasson, Jg, Clough-Gorr, K, Comber, H, Mazzoleni, G, Giacomin, A, Sardo, A, Barchielli, A, Serraino, D, De Angelis, R, Mallone, S, Tavilla, A, Pierannunzio, D, Rossi, S, Santaquilani, M, Knijn, A, Pannozzo, F, Gennaro, V, Benfatto, L, Ricci, P, Autelitano, M, Spagnoli, G, Fusco, M, Usala, M, Vitale, F, Michiara, M, Tumino, R, Mangone, L, Falcini, F, Ferretti, S, Filiberti, Ra, Marani, E, Iannelli, A, Sensi, F, Puffer, S, Gentilini, M, Madeddu, A, Ziino, A, Maspero, S, Candela, P, Stracci, F, Tagliabue, G, Rugge, M, Gatta, G, Botta, L, Capocaccia, R, Pildava, S, Smailyte, G, Calleja, N, Johannesen, Tb, Rachtan, J, Gozdz, S, Blaszczyk, J, Kepska, K, de Lacerda, Gf, Bento, Mj, Miranda, A, Diba, C, Almar, E, Larranaga, N, de Munain, Al, Torrella-Ramos, M, Garcia, Jmd, Marcos-Gragera, R, Sanchez, Mj, Navarro, C, Salmeron, D, Moreno-Iribas, C, Galceran, J, Carulla, M, Mousavi, M, Bouchardy, C, Ess, Sm, Bordoni, A, Konzelmann, I, Rashbass, J, Gavin, A, Brewster, Dh, Huws, Dw, Visser, O, Bielska-Lasota, M, Primic-Zakelj, M, Kunkler, I, and Benhamou, E

Subjects
Oncology, Male, Survival, 030232 urology & nephrology, Disease, Carcinoma, Community network, Europe, Germ cell and embryonal, Neoplasms, Penis neoplasms, Rare diseases, Squamous cell, Tertiary care centres, Testicular neoplasms, Surgery, 0302 clinical medicine, Epidemiology, Testicular neoplasm, Referral and Consultation, General Medicine, Neoplasms, Germ Cell and Embryonal, Tertiary care centre, Survival Rate, 030220 oncology & carcinogenesis, Lymphatic Metastasis, Carcinoma, Squamous Cell, Human, medicine.medical_specialty, Penile squamous cell carcinoma, Socio-culturale, Cancer Care Facilities, 03 medical and health sciences, Penis neoplasm, Rare Disease, Internal medicine, medicine, Humans, Penile Neoplasms, Neoplasm Staging, Penis Neoplasms, business.industry, Cancer Care Facilitie, Lymphatic Metastasi, medicine.disease, Testicular germ cell, Adult life, Penile Neoplasm, Proper treatment, Neoplasm, Lymph Node Excision, business, Delivery of Health Care
Abstract

Germ-cell tumours (GCT) of the testis and penile squamous cell carcinoma (PeSCC) are a rare and a very rare uro-genital cancers, respectively. Both tumours are well defined entities in terms of management, where specific recommendations - in the form of continuously up-to-dated guide lines- are provided. Impact of these tumour is relevant. Testicular GCT affects young, healthy men at the beginning of their adult life. PeSCC affects older men, but a proportion of these patients are young and the personal consequences of the disease may be devastating. Deviation from recommended management may be a reason of a significant prognostic worsening, as proper treatment favourably impacts on these tumours, dramatically on GCT and significantly on PeSCC. RARECAREnet data may permit to analyse how survivals may vary according to geographical areas, histology and age, leading to assume that non-homogeneous health-care resources may impact the cure and definitive outcomes. In support of this hypothesis, some epidemiologic datasets and clinical findings would indicate that survival may improve when appropriate treatments are delivered, linked to a different accessibility to the best health institutions, as a consequence of geographical, cultural and economic barriers. Finally, strong clues based on epidemiological and clinical data support the hypothesis that treatment delivered at reference centres or under the aegis of a qualified multi-institutional network is associated with a better prognosis of patients with these malignancies. The ERN EURACAN represents the best current European effort to answer this clinical need.

Published
2018

6. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study

Author

Laura Botta, Gemma Gatta, Riccardo Capocaccia, Charles Stiller, Adela Cañete, Luigino Dal Maso, Kaire Innos, Ana Mihor, Friederike Erdmann, Claudia Spix, Brigitte Lacour, Rafael Marcos-Gragera, Deirdre Murray, Silvia Rossi, Monika Hackl, Elizabeth Van Eycken, Nancy Van Damme, Zdravka Valerianova, Mario Sekerija, Vasos Scoutellas, Anna Demetriou, Ladislav Dušek, Denisa Krejci, Hans Storm, Margit Mägi, Keiu Paapsi, Nea Malila, Janne Pitkäniemi, Valerie Jooste, Jacqueline Clavel, Claire Poulalhon, Emmanuel Desandes, Alain Monnereau, Alexander Katalinic, Eleni Petridou, Georgios Markozannes, Miklos Garami, Helgi Birgisson, Paul M Walsh, Guido Mazzoleni, Fabio Vittadello, Francesco Cuccaro, Rocco Galasso, Giuseppe Sampietro, Stefano Rosso, Cinzia Gasparotto, Giovanni Maifredi, Margherita Ferrante, Antonina Torrisi, Antonella Sutera Sardo, Maria Letizia Gambino, Monica Lanzoni, Paola Ballotari, Erica Giacomazzi, Stefano Ferretti, Adele Caldarella, Gianfranco Manneschi, Milena Sant, Paolo Baili, Franco Berrino, Annalisa Trama, Roberto Lillini, Alice Bernasconi, Simone Bonfarnuzzo, Claudia Vener, Fabio Didonè, Paolo Lasalvia, Giulia Del Monego, Lucia Buratti, Diego Serraino, Martina Taborelli, Roberta De Angelis, Elena Demuru, Corrado Di Benedetto, Mariano Santaquilani, Serenella Venanzi, Marco Tallon, Luca Boni, Silvia Iacovacci, Antonio Giampiero Russo, Federico Gervasi, Gianbattista Spagnoli, Luca Cavalieri d'Oro, Mario Fusco, Maria Francesca Vitale, Mario Usala, Francesco Vitale, Maria Michiara, Giorgio Chiranda, Carlotta Sacerdote, Milena Maule, Giuseppe Cascone, Eugenia Spata, Lucia Mangone, Fabio Falcini, Rossella Cavallo, Daniela Piras, Ylenia Dinaro, Marine Castaing, Anna Clara Fanetti, Sante Minerba, Giuseppina Candela, Tiziana Scuderi, Roberto Vito Rizzello, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Angelita Brustolin, Santa Pildava, Giedre Smailyte, Miriam Azzopardi, Tom Børge Johannesen, Joanna Didkowska, Urszula Wojciechowska, Magdalena Bielska-Lasota, Ana Pais, Ana Maria Ferreira, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Vesna Zadnik, Tina Zagar, Carmen Sánchez-Contador Escudero, Paula Franch Sureda, Arantza Lopez de Munain, Marta De-La-Cruz, Marìa Dolores Rojas, Araceli Aleman, Ana Vizcaino, Fernando Almela, Arantza Sanvisens, Maria Josè Sanchez, Maria Dolores Chirlaque, Antonia Sanchez-Gil, Marcela Guevara, Eva Ardanaz, Adela Cañete-Nieto, Rafael Peris-Bonet, Jaume Galceran, Maria Carulla, Claudia Kuehni, Shelagh Redmond, Otto Visser, Henrike Karim-Kos, Sarah Stevens, Anna Gavin, David Morrison, Dyfed Wyn Huws, Botta, L, Gatta, G, Capocaccia, R, Stiller, C, Canete, A, Dal Maso, L, Innos, K, Mihor, A, Erdmann, F, Spix, C, Lacour, B, Marcos-Gragera, R, Murray, D, Rossi, S, Hackl, M, Van Eycken, E, Van Damme, N, Valerianova, Z, Sekerija, M, Scoutellas, V, Demetriou, A, Dusek, L, Krejci, D, Storm, H, Magi, M, Paapsi, K, Malila, N, Pitkaniemi, J, Jooste, V, Clavel, J, Poulalhon, C, Desandes, E, Monnereau, A, Katalinic, A, Petridou, E, Markozannes, G, Garami, M, Birgisson, H, Walsh, P, Mazzoleni, G, Vittadello, F, Cuccaro, F, Galasso, R, Sampietro, G, Rosso, S, Gasparotto, C, Maifredi, G, Ferrante, M, Torrisi, A, Sutera Sardo, A, Gambino, M, Lanzoni, M, Ballotari, P, Giacomazzi, E, Ferretti, S, Caldarella, A, Manneschi, G, Sant, M, Baili, P, Berrino, F, Trama, A, Lillini, R, Bernasconi, A, Bonfarnuzzo, S, Vener, C, Didone, F, Lasalvia, P, Del Monego, G, Buratti, L, Serraino, D, Taborelli, M, De Angelis, R, Demuru, E, Di Benedetto, C, Santaquilani, M, Venanzi, S, Tallon, M, Boni, L, Iacovacci, S, Russo, A, Gervasi, F, Spagnoli, G, Cavalieri d'Oro, L, Fusco, M, Vitale, M, Usala, M, Vitale, F, Michiara, M, Chiranda, G, Sacerdote, C, Maule, M, Cascone, G, Spata, E, Mangone, L, Falcini, F, Cavallo, R, Piras, D, Dinaro, Y, Castaing, M, Fanetti, A, Minerba, S, Candela, G, Scuderi, T, Rizzello, R, Stracci, F, Tagliabue, G, Rugge, M, Brustolin, A, Pildava, S, Smailyte, G, Azzopardi, M, Johannesen, T, Didkowska, J, Wojciechowska, U, Bielska-Lasota, M, Pais, A, Ferreira, A, Bento, M, Miranda, A, Safaei Diba, C, Zadnik, V, Zagar, T, Sanchez-Contador Escudero, C, Franch Sureda, P, Lopez de Munain, A, De-La-Cruz, M, Rojas, M, Aleman, A, Vizcaino, A, Almela, F, Sanvisens, A, Sanchez, M, Chirlaque, M, Sanchez-Gil, A, Guevara, M, Ardanaz, E, Canete-Nieto, A, Peris-Bonet, R, Galceran, J, Carulla, M, Kuehni, C, Redmond, S, Visser, O, Karim-Kos, H, Stevens, S, Gavin, A, Morrison, D, and Huws, D

Subjects
Retinal Neoplasms, Retinoblastoma, Bone Neoplasms, Sarcoma, Ewing, EUROCARE-6, survival, Burkitt Lymphoma, population-based cancer registrie, Europe, Oncology, Humans, cure fraction, childhood cancer, EUROCARE, Child, chidlhood cancer
Abstract

Background: The EUROCARE-5 study revealed disparities in childhood cancer survival among European countries, giving rise to important initiatives across Europe to reduce the gap. Extending its representativeness through increased coverage of eastern European countries, the EUROCARE-6 study aimed to update survival progress across countries and years of diagnosis and provide new analytical perspectives on estimates of long-term survival and the cured fraction of patients with childhood cancer. Methods: In this population-based study, we analysed 135 847 children (aged 0–14 years) diagnosed during 2000–13 and followed up to the end of 2014, recruited from 80 population-based cancer registries in 31 European countries. We calculated age-adjusted 5-year survival differences by country and over time using period analysis, for all cancers combined and for major cancer types. We applied a variant of standard mixture cure models for survival data to estimate the cure fraction of patients by childhood cancer and to estimate projected 15-year survival. Findings: 5-year survival for all childhood cancer combined in Europe in 2010–14 was 81% (95% CI 81–82), showing an increase of three percentage points compared with 2004–06. Significant progress over time was observed for almost all cancers. Survival remained stable for osteosarcomas, Ewing sarcoma, Burkitt lymphoma, non-Hodgkin lymphomas, and rhabdomyoscarcomas. For all cancers combined, inequalities still persisted among European countries (with age-adjusted 5-year survival ranging from 71% [95% CI 60–79] to 87% [77–93]). The 15-year survival projection for all patients with childhood cancer diagnosed in 2010–13 was 78%. We estimated the yearly long-term mortality rate due to causes other than the diagnosed cancer to be around 2 per 1000 patients for all childhood cancer combined, but to approach zero for retinoblastoma. The cure fraction for patients with childhood cancer increased over time from 74% (95% CI 73–75) in 1998–2001 to 80% (79–81) in 2010–13. In the latter cohort, the cure fraction rate ranged from 99% (95% CI 74–100) for retinoblastoma to 60% (58–63) for CNS tumours and reached 90% (95% CI 87–93) for lymphoid leukaemia and 70% (67–73) for acute myeloid leukaemia. Interpretation: Childhood cancer survival is increasing over time in Europe but there are still some differences among countries. Regular monitoring of childhood cancer survival and estimation of the cure fraction through population-based registry data are crucial for evaluating advances in paediatric cancer care. Funding: European Commission.

Published
2022

7. Epidemiology of rare cancers and inequalities in oncologic outcomes

Author

G. Gatta, A. Trama, R. Capocaccia, Monika Hackl, Elizabeth Van Eycken, Kris Henau, Nadya Dimitrova, Mario Sekerija, Ladislav Dušek, Margit Mägi, Nea Malila, Maarit Leinonen, Michel Velten, Xavier Troussard, Veronique Bouvier, Anne-Valérie Guizard, Anne-Marie Bouvier, Patrick Arveux, Marc Maynadié, Anne-Sophie Woronoff, Michel Robaszkiewicz, Isabelle Baldi, Alain Monnereau, Brigitte Tretarre, Marc Colonna, Florence Molinié, Simona Bara, Claire Schvartz, Bénédicte Lapôtre-Ledoux, Pascale Grosclaude, Roland Stabenow, Sabine Luttmann, Alice Nennecke, Jutta Engel, Gabriele Schubert-Fritschle, Jan Heidrich, Bernd Holleczek, Jón Gunnlaugur Jónasson, Kerri Clough-Gorr, Harry Comber, Guido Mazzoleni, Adriano Giacomin, Antonella Sutera Sardo, Alessandro Barchielli, Diego Serraino, Roberta De Angelis, Sandra Mallone, Andrea Tavilla, Daniela Pierannunzio, Silvia Rossi, Mariano Santaquilani, Arnold Knijn, Fabio Pannozzo, Valerio Gennaro, Lucia Benfatto, Paolo Ricci, Mariangela Autelitano, Gianbattista Spagnoli, Mario Fusco, Mario Usala, Francesco Vitale, Maria Michiara, Rosario Tumino, Lucia Mangone, Fabio Falcini, Stefano Ferretti, Rosa Angela Filiberti, Enza Marani, Arturo Iannelli, Flavio Sensi, Silvano Piffer, Maria Gentilini, Anselmo Madeddu, Antonio Ziino, Sergio Maspero, Pina Candela, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Annalisa Trama, Gemma Gatta, Laura Botta, Riccardo Capocaccia, Santa Pildava, Giedre Smailyte, Neville Calleja, Tom Børge Johannesen, Jadwiga Rachtan, Stanisław Góźdź, Jerzy Błaszczyk, Kamila Kępska, Forjaz de Lacerda, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Enrique Almar, Nerea Larrañaga, Arantza Lopez de Munain, Ana Torrella-Ramos, José María Díaz García, Rafael Marcos-Gragera, Maria Josè Sanchez, Carmen Navarro, Diego Salmeron, Conchi Moreno-Iribas, Jaume Galceran, Marià Carulla, Mohsen Mousavi, Christine Bouchardy, Silvia M. Ess, Andrea Bordoni, Isabelle Konzelmann, Jem Rashbass, Anna Gavin, David H. Brewster, Dyfed Wyn Huws, Otto Visser, Magdalena Bielska-Lasota, Maja Primic-Zakelj, Ian Kunkler, Ellen Benhamou, Gatta G., Trama A., Capocaccia R., Hackl M., Eycken E.V., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Botta L., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., and Benhamou E.

Subjects
0301 basic medicine, Male, Settore MED/06 - Oncologia Medica, 0302 clinical medicine, Neoplasms, Epidemiology, Prevalence, Europe, Population-based cancer registry, Rare cancers, Child, education.field_of_study, Relative survival, Incidence (epidemiology), Incidence, General Medicine, Middle Aged, Survival Rate, Healthcare Disparitie, Oncology, 030220 oncology & carcinogenesis, Child, Preschool, Female, Human, Adult, medicine.medical_specialty, Adolescent, Surgery, Population, Socio-culturale, Europe, Population-based cancer registry, Rare cancers, 03 medical and health sciences, Young Adult, Rare Diseases, Age Distribution, Rare Disease, medicine, Humans, Healthcare Disparities, Sex Distribution, education, Survival rate, Aged, business.industry, Public health, Infant, Newborn, Cancer, Rare cancer, Infant, medicine.disease, Clinical trial, 030104 developmental biology, Neoplasm, business, Demography
Abstract

Rare cancers epidemiology is better known compared to the other rare diseases. Thanks to the long history of the European population-based cancer registries and to the EUROCARE huge database, the burden of rare cancers has been estimated the European (EU28) population. A considerable fraction of all cancers is represented by rare cancers (24%). They are a heterogeneous group of diseases, but they share similar problems: uncertainty of diagnosis, lack of therapies, poor research opportunities, difficulties in clinical trials, lack of expertise and of centres of reference. This paper analyses the major epidemiological indicators of frequency (incidence and prevalence) and outcome (5-year survival) of all rare cancers combined and of selected rare cancers that will be in depth treated in this monographic issue. Source of the results is the RARECAREnet search tool, a database publicly available. Disparities both in incidence and survival, and consequently in prevalence of rare cancers were reported across European countries. Major differences were shown in outcome: 5-year relative survival for all rare cancers together, adjusted by age and case-mix, varied from 55% or more (Italy, Germany, Belgium and Iceland) and less than 40% (Bulgaria, Lithuania and Slovakia). Similarly, for all the analyzed rare cancers, a large survival gap was observed between the Eastern and the Nordic and Central European regions. Dramatic geographical variations were assessed for curable cancers like testicular and non epithelial ovarian cancers. Geographical difference in the annual age-adjusted incidence rates for all rare cancers together varied between >140 per 100,000 (Italy, Scotland, France, Germany, and Switzerland) and

Published
2019

8. Treatment challenges in and outside a network setting: Soft tissue sarcomas

Author

Pasquali, Sandro, Bonvalot, Sylvie, Tzanis, Dimitri, Casali Paolo, G., Trama, Annalisa, Gronchi, Alessandro, Rarecarenet, Wg, Monika, Hackl, Elizabeth, Van Eycken, Kris, Henau, Nadya, Dimitrova, Mario, Sekerija, Ladislav, Dušek, Margit, Mägi, Nea, Malila, Maarit, Leinonen, Michel, Velten, Xavier, Troussard, Veronique, Bouvier, Anne-Valérie, Guizard, Anne-Marie, Bouvier, Patrick, Arveux, Marc, Maynadié, Anne-Sophie, Woronoff, Michel, Robaszkiewicz, Isabelle, Baldi, Alain, Monnereau, Brigitte, Tretarre, Marc, Colonna, Florence, Molinié, Simona, Bara, Claire, Schvartz, Bénédict, e Lapôtre-Ledoux, Pascale, Grosclaude, Roland, Stabenow, Sabine, Luttmann, Alice, Nennecke, Jutta, Engel, Gabriele, Schubert-Fritschle, Jan, Heidrich, Bernd, Holleczek, Jón, Gunnlaugur Jónasson, Kerri, Clough-Gorr, Harry, Comber, Guido, Mazzoleni, Adriano, Giacomin, Antonella, Sutera Sardo, Alessandro, Barchielli, Diego, Serraino, Roberta, De Angelis, Sandra, Mallone, Andrea, Tavilla, Daniela, Pierannunzio, Silvia, Rossi, Mariano, Santaquilani, Arnold, Knijn, Fabio, Pannozzo, Valerio, Gennaro, Lucia, Benfatto, Paolo, Ricci, Mariangela, Autelitano, Gianbattista, Spagnoli, Mario, Fusco, Mario, Usala, Francesco, Vitale, Maria, Michiara, Rosario, Tumino, Lucia, Mangone, Fabio, Falcini, Ferretti, Stefano, Rosa Angela, Filiberti, Enza, Marani, Arturo, Iannelli, Flavio, Sensi, Silvano, Piffer, Maria, Gentilini, Anselmo, Madeddu, Antonio, Ziino, Sergio, Maspero, Pina, Candela, Fabrizio, Stracci, Giovanna, Tagliabue, Massimo, Rugge, Annalisa, Trama, Gemma, Gatta, Laura, Botta, Riccardo, Capocaccia, Santa, Pildava, Giedre, Smailyte, Neville, Calleja, Tom, Børge Johannesen, Jadwiga, Rachtan, Stanisław, Góźdź, Jerzy, Błaszczyk, Kamila, Kępska, Gonçalo, Forjaz de Lacerda, Maria José, Bento, Ana, Miranda, Chakameh, Safaei Diba, Enrique, Almar, Nere, a Larrañaga, Arantza, Lopez de Munain, Ana, Torrella-Ramos, José Marí, a Díaz García, Rafael, Marcos-Gragera, Maria Josè, Sanchez, Carmen, Navarro, Diego, Salmeron, Conchi, Moreno-Iribas, Jaume, Galceran, Marià, Carulla, Mohsen, Mousavi, Christine, Bouchardy, Silvia M., Ess, Andrea, Bordoni, Isabelle, Konzelmann, Jem, Rashbass, Ann, a Gavin, David H., Brewster, Dyfed, Wyn Huws, Otto, Visser, Magdalena, Bielska-Lasota, Maja, Primic-Zakelj, Ian, Kunkler, Ellen, Benhamou, Pasquali S., Bonvalot S., Tzanis D., Casali P.G., Trama A., Gronchi A., Hackl M., Van Eycken E., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Bernd Holleczek, Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Gatta G., Botta L., Capocaccia R., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda G.F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., and Benhamou E.

Subjects
medicine.medical_specialty, Guidelines, Network, Referral centre, Sarcoma, Treatment, Surgery, Oncology, Referral, Population, MEDLINE, Socio-culturale, Disease, Cancer Care Facilities, Guideline, 03 medical and health sciences, Rare Diseases, 0302 clinical medicine, Rare Disease, Health care, medicine, Humans, 030212 general & internal medicine, Registries, education, Referral and Consultation, education.field_of_study, business.industry, Cancer Care Facilitie, Soft tissue sarcoma, General Medicine, medicine.disease, Europe, Clinical research, 030220 oncology & carcinogenesis, Practice Guidelines as Topic, Medical emergency, business, Delivery of Health Care, Human
Abstract

Patients with soft tissue sarcoma (STS) experienced better outcomes when treated according to existing clinical practice guidelines either at reference institution or dedicated treatment networks. Despite increasing evidence supporting referral to sarcoma specialised units, up to half of patients are not managed according to guidelines, particularly those in the early stage of their disease requiring surgery. Also, criteria to certify expertise of institutions, such as the treatment volume, are debated and health authorities have only recently started identification of these centres and creation of treatment networks in Europe as well as in several countries. This process have important implications for both patient outcomes and innovation of existing treatment strategies through clinical research, making improvement of clinical pathways a priority for health care authorities. This article will discuss issues with management of patients with STS, such as pathological diagnosis and adherence to guidelines, and the definition of referral centres and networks will be illustrated along with existing experiences and population-based data.

Published
2019

9. Treatment challenges in and outside a network setting: Head and neck cancers

Author

Ester Orlandi, Salvatore Alfieri, Christian Simon, Annalisa Trama, Lisa Licitra, Monika Hackl, Elizabeth Van Eycken, Kris Henau, Nadya Dimitrova, Mario Sekerija, Ladislav Dušek, Margit Mägi, Nea Malila, Maarit Leinonen, Michel Velten, Xavier Troussard, Veronique Bouvier, Anne-Valérie Guizard, Anne-Marie Bouvier, Patrick Arveux, Marc Maynadié, Anne-Sophie Woronoff, Michel Robaszkiewic, Isabelle Baldi, Alain Monnereau, Brigitte Tretarre, Marc Colonna, Florence Molinié, Simona Bara, Claire Schvartz, Bénédicte Lapôtre-Ledoux, Pascale Grosclaude, Roland Stabenow, Sabine Luttmann, Alice Nennecke, Jutta Engel, Gabriele Schubert-Fritschle, Jan Heidrich, Bernd Holleczek, Jón Gunnlaugur Jónasson, Kerri Clough-Gorr, Harry Comber, Guido Mazzoleni, Adriano Giacomin, Antonella Sutera Sardo, Alessandr Barchielli, Diego Serraino, Roberta De Angelis, Sandra Mallone, Andrea Tavilla, Daniela Pierannunzio, Silvia Rossi, Mariano Santaquilani, Arnold Knijn, Fabio Pannozzo, Valerio Gennaro, Lucia Benfatto, Paolo Ricci, Mariangela Autelitano, Gianbattista Spagnoli, Mario Fusco, Mario Usala, Francesco Vitale, Maria Michiara, Rosario Tumino, Lucia Mangone, Fabio Falcini, Stefano Ferretti, Rosa Angela Filiberti, Enza Marani, Arturo Iannelli, Flavio Sensi, Silvano Piffer, Maria Gentilini, Anselmo Madeddu, Antonio Ziino, Sergio Maspero, Pina Candela, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Gemma Gatta, Laura Botta, Riccardo Capocaccia, Santa Pildava, Giedre Smailyte, Neville Calleja, Tom Børge Johannesen, Jadwiga Rachtan, Stanisław Góźdź, Jerzy Błaszczyk, Kamila Kępska, Gonçalo Forjaz de Lacerda, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Enrique Almar, Nerea Larrañaga, Arantza Lopez de Munain, Ana Torrella-Ramos, José María Díaz García, Rafael Marcos-Gragera, Maria Josè Sanchez, Carmen Navarro, Diego Salmeron, Conchi Moreno-Iribas, Jaume Galceran, Marià Carulla, Mohsen Mousavi, Christine Bouchardy, Silvia M. Ess, Andrea Bordoni, Isabelle Konzelmann, Jem Rashbass, Anna Gavin, David H. Brewster, Dyfed Wyn Huws, Otto Visser, Magdalena Bielska-Lasota, Maja Primic-Zakelj, Ian Kunkler, Ellen Benhamou, Orlandi E., Alfieri S., Simon C., Trama A., Licitra L., Hackl M., Eycken E.V., Henau K., Dimitrova N., Sekerija M., Dusek L., Magi M., Malila N., Leinonen M., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewic M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Comber H., Mazzoleni G., Giacomin A., Sutera Sardo A., Barchielli A., Serraino D., De Angelis R., Mallone S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pannozzo F., Gennaro V., Benfatto L., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Ziino A., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Gatta G., Botta L., Capocaccia R., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., de Lacerda G.F., Bento M.J., Miranda A., Diba C.S., Almar E., Larranaga N., de Munain A.L., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Visser O., Bielska-Lasota M., Primic-Zakelj M., Kunkler I., and Benhamou E.

Subjects
0301 basic medicine, medicine.medical_specialty, Socio-culturale, Social issues, Multidisciplinary team, 03 medical and health sciences, Therapeutic approach, 0302 clinical medicine, Rare Diseases, Multidisciplinary approach, medicine, Humans, Adverse effect, Intensive care medicine, Head and neck cancer, Referral and Consultation, Patient Care Team, European reference networks joint action of rare cancers, Rare disease, business.industry, Head and Neck Neoplasm, General Medicine, medicine.disease, Europe, 030104 developmental biology, Clinical research, Oncology, Head and Neck Neoplasms, 030220 oncology & carcinogenesis, European reference networks joint action of rare cancer, Surgery, business, Delivery of Health Care, Human
Abstract

Head and neck cancer (HNC) is a rare disease that can affect different sites and is characterized by variable incidence and 5-year survival rates across Europe. Multiple factors need to be considered when choosing the most appropriate treatment for HNC patients, such as age, comorbidities, social issues, and especially whether to prefer surgery or radiation-based protocols. Given the complexity of this scenario, the creation of a highly specialized multidisciplinary team is recommended to guarantee the best oncological outcome and prevent or adequately treat any adverse effect. Data from literature suggest that the multidisciplinary team-based approach is beneficial for HNC patients and lead to improved survival rates. This result is likely due to improved diagnostic and staging accuracy, a more efficacious therapeutic approach and enhanced communication across disciplines. Despite the benefit of MTD, it must be noted that this approach requires considerable time, effort and financial resources and is usually more frequent in highly organized and high-volume centers. Literature data on clinical research suggest that patients treated in high-accrual centers report better treatment outcomes compared to patients treated in low-volume centers, where a lower radiotherapy-compliance and worst overall survival have been reported. There is general agreement that treatment of rare cancers such as HNC should be concentrated in high volume, specialized and multidisciplinary centers. In order to achieve this goal, the creation of international collaboration network is fundamental. The European Reference Networks for example aim to create an international virtual advisory board, whose objectives are the exchange of expertise, training, clinical collaboration and the reduction of disparities and enhancement of rationalize migration across Europe. The purpose of our work is to review all aspects and challenges in and outside this network setting planned for the management of HNC patients.

Published
2017

10. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study

Author

Fabio Falcini, Charles A. Stiller, Diego Serraino, Antonella Sutera Sardo, Kerri Clough-Gorr, Mario Fusco, Véronique Bouvier, Silvia Francisci, Alain Monnereau, Carmen Navarro, Alessandro Barchielli, Annalisa Trama, Bénédicte Lapôtre-Ledoux, Stanislaw Gózdz, Isabelle Konzelmann, J. Błaszczyk, Laura Botta, Simona Bara, Flavio Sensi, Gonçalo Forjaz de Lacerda, Nadya Dimitrova, Lucia Mangone, Pamela Minicozzi, Maria Michiara, Neville Calleja, M Usala, E Marani, Innos Kaire, Tom Børge Johannesen, Ladislav Dušek, Sabine Luttmann, M Autelitano, Anne Sophie Woronoff, Vincent K Y Ho, Francesco Vitale, Silvano Piffer, Jan Maarten van der Zwan, Dyfed Wyn Huws, David H. Brewster, Margit Mägi, Zdravka Valerianova, Anna Luisa Caiazzo, Maja Primic Žakelj, Adriano Giacomin, E. Almar, F Bella, Ellen Benhamou, Arantza Lopez de Munain, Patrick Arveux, Claire Schvartz, José María Díaz García, M. Robaszkiewicz, Isabelle Baldi, Otto Visser, Mohsen Mousavi, Maria José Bento, Lesley A. Anderson, Chakameh Safaei Diba, Mariano Santaquilani, Gemma Gatta, Tina Žagar, Pina Candela, Jadwiga Rachtan, María José Sánchez, Andrea Bordoni, Monika Hackl, Gabriele Schubert-Fritschle, Nea Malila, Diego Salmerón, Massimo Rugge, Carmen Tereanu, Maarit K. Leinonen, Jem Rashbass, Arturo Iannelli, Milena Sant, Antonino Ziino Colanino, Marià Carulla, Christine Bouchardy, Keiu Paapsi, Marc Colonna, Jon G. Jonasson, Brigitte Trétarre, A.V. Guizard, Riccardo Capocaccia, Xavier Troussard, Jan Heidrich, Dominic Agius, Kamila Kepska, Daniela Pierannunzio, Santa Pildava, Stefano Ferretti, Silvia Rossi, Guido Mazzoleni, Rafael Marcos-Gragera, Giedre Smailyte, Gianbattista Spagnoli, Nancy Van Damme, Roland Stabenow, Anna Gavin, Paolo Baili, Anselmo Madeddu, Fabio Pannozzo, M. Sekerija, Silvia Ess, Sandra Mallone, Rosa Filiberti, Pascale Grosclaude, Florence Molinié, S Maspero, Alice Nennecke, Rosario Tumino, Renée Otter, Ana Torrella-Ramos, Fabrizio Stracci, Giovanna Tagliabue, Michel Velten, Andrea Tavilla, Marc Maynadié, Arnold Knijn, Conchi Moreno-Iribas, Eva Ardanaz, M.A. Gentilini, Paolo Ricci, Liesbet Van Eycken, Ana Miranda, Sabine Siesling, Nerea Larrañaga, Roberta De Angelis, Harry Comber, Paolo Collarile, K. Henau, Bernd Holleczek, Anne Marie Bouvier, Jutta Engel, Jaume Galceran, Gatta G., Capocaccia R., Botta L., Mallone S., De Angelis R., Ardanaz E., Comber H., Dimitrova N., Leinonen M.K., Siesling S., van der Zwan J.M., Van Eycken L., Visser O., Zakelj M.P., Anderson L.A., Bella F., Kaire I., Otter R., Stiller C.A., Trama A., Hackl M., Henau K., Van Damme N., Valerianova Z., Sekerija M., Dusek L., Magi M., Paapsi K., Malila N., Velten M., Troussard X., Bouvier V., Guizard A.-V., Bouvier A.-M., Arveux P., Maynadie M., Woronoff A.-S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Nennecke A., Engel J., SchubertFritschle G., Heidrich J., Holleczek B., Jonasson J.G., Clough-Gorr K., Mazzoleni G., Giacomin A., Sardo A.S., Barchielli A., Serraino D., Collarile P., Pannozzo F., Ricci P., Autelitano M., Spagnoli G., Fusco M., Usala M., Vitale F., Michiara M., Tumino R., Mangone L., Falcini F., Ferretti S., Filiberti R.A., Marani E., Caiazzo A.L., Iannelli A., Sensi F., Piffer S., Gentilini M., Madeddu A., Colanino A.Z., Maspero S., Candela P., Stracci F., Tagliabue G., Rugge M., Baili P., Minicozzi P., Sant M., Tereanu C., Francisci S., Tavilla A., Pierannunzio D., Rossi S., Santaquilani M., Knijn A., Pildava S., Smailyte G., Calleja N., Agius D., Johannesen T.B., Rachtan J., Gozdz S., Blaszczyk J., Kepska K., Lacerda G.F.D., Bento M.J., Miranda A., Diba C.S., Zagar T., Almar E., Larranaga N., Munain A.L.D., Torrella-Ramos A., Garcia J.M.D., Marcos-Gragera R., Sanchez M.J., Navarro C., Salmeron D., Moreno-Iribas C., Galceran J., Carulla M., Mousavi M., Bouchardy C., Ess S.M., Bordoni A., Konzelmann I., Rashbass J., Gavin A., Brewster D.H., Huws D.W., Ho V.K., and Benhamou E.

Subjects
Male, 0301 basic medicine, Pathology, population-based registries, Cancer Care Facilities, Delivery of Health Care, Europe, Female, Hospitalization, Humans, Incidence, Neoplasms, Rare Diseases, Registries, Survival Rate, Oncology, 0302 clinical medicine, Medicine, media_common, Tumors -- Treatment -- Europe, education.field_of_study, Relative survival, Incidence (epidemiology), RARECARE project, 030220 oncology & carcinogenesis, medicine.medical_specialty, Health surveys, Population, Socio-culturale, 03 medical and health sciences, SDG 3 - Good Health and Well-being, media_common.cataloged_instance, Cancer -- Mortality, Risk factor, European union, education, Survival rate, Oncology, cancer burden, incidence, rare cancer,population-based registries, rare cancers, cancer registry, RARECARE, business.industry, Rare cancer, Cancer -- Patients -- Long-term care, Cancer registry, 030104 developmental biology, cancer burden, business, Demography, Rare disease
Abstract

Background: 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. Methods: We analysed data from 94 cancer registries for more than 2 million rare cancer diagnoses, to estimate European incidence and survival in 2000–07 and the corresponding time trends during 1995–2007. Incidence was calculated as the number of new cases divided by the corresponding total person-years in the population. 5-year relative survival was calculated by the Ederer-2 method. Seven registries (Belgium, Bulgaria, Finland, Ireland, the Netherlands, Slovenia, and the Navarra region in Spain) provided additional data for hospitals treating about 220 000 cases diagnosed in 2000–07. We also calculated hospital volume admission as the number of treatments provided by each hospital rare cancer group sharing the same referral pattern. Findings: Rare cancers accounted for 24% of all cancers diagnosed in the EU during 2000–07. The overall incidence rose annually by 0.5% (99·8% CI 0·3–0·8). 5-year relative survival for all rare cancers was 48·5% (95% CI 48·4 to 48·6), compared with 63·4% (95% CI 63·3 to 63·4) for all common cancers. 5-year relative survival increased (overall 2·9%, 95% CI 2·7 to 3·2), from 1999–2001 to 2007–09, and for most rare cancers, with the largest increases for haematological tumours and sarcomas. The amount of centralisation of rare cancer treatment varied widely between cancers and between countries. The Netherlands and Slovenia had the highest treatment volumes. Interpretation: Our study benefits from the largest pool of population-based registries to estimate incidence and survival of about 200 rare cancers. Incidence trends can be explained by changes in known risk factors, improved diagnosis, and registration problems. Survival could be improved by early diagnosis, new treatments, and improved case management. The centralisation of treatment could be improved in the seven European countries we studied., peer-reviewed

Published
2017

11. Survival of 86,690 patients with thyroid cancer: A population-based study in 29 European countries from EUROCARE-5

Author

L. Dal Maso, A. Tavilla, F. Pacini, D. Serraino, B.A.C. van Dijk, M.D. Chirlaque, R. Capocaccia, N. Larrañaga, M. Colonna, D. Agius, E. Ardanaz, J. Rubió-Casadevall, A. Kowalska, S. Virdone, S. Mallone, H. Amash, R. De Angelis, M. Hackl, N. Zielonke, E. Van Eycken, K. Henau, Z. Valerianova, N. Dimitrova, M. Sekerija, L. Dušek, M. Zvolský, H. Storm, G. Engholm, M. Mägi, T. Aareleid, N. Malila, K. Seppä, M. Velten, A.V. Guizard, J. Faivre, A.S. Woronoff, B. Tretarre, N. Bossard, Z. Uhry, F. Molinié, S. Bara, C. Schvartz, B. Lapôtre-Ledoux, P. Grosclaude, R. Stabenow, S. Luttmann, A. Eberle, H. Brenner, A. Nennecke, J. Engel, G. Schubert-Fritschle, J. Heidrich, B. Holleczek, A. Katalinic, J.G. Jónasson, L. Tryggvadóttir, H. Comber, G. Mazzoleni, A. Bulatko, C. Buzzoni, A. Giacomin, A. Sutera Sardo, A. Mazzei, S. Ferretti, A. Barchielli, A. Caldarella, G. Gatta, M. Sant, C. Amati, P. Baili, F. Berrino, S. Bonfarnuzzo, L. Botta, F. Di Salvo, R. Foschi, C. Margutti, E. Meneghini, P. Minicozzi, A. Trama, A. Zucchetto, M. Caldora, E. Carrani, S. Francisci, D. Pierannunzio, P. Roazzi, S. Rossi, M. Santaquilani, F. Pannozzo, S. Busco, R.A. Filiberti, M. Vercelli, P. Ricci, M. Autelitano, G. Spagnoli, C. Cirilli, M. Fusco, M.F. Vitale, M. Usala, F. Vitale, B. Ravazzolo, M. Michiara, R. Tumino, L. Mangone, M. Vicentini, F. Falcini, A. Iannelli, O. Sechi, R. Cesaraccio, S. Piffer, A. Madeddu, F. Tisano, S. Maspero, A.C. Fanetti, R. Zanetti, S. Rosso, P. Candela, T. Scuderi, F. Stracci, A. Rocca, G. Tagliabue, P. Contiero, M. Rugge, S. Tognazzo, S. Pildava, G. Smailyte, N. Calleja, T.B. Johannesen, J. Rachtan, S. Góźdź, R. Mężyk, J. Błaszczyk, M. Bębenek, M. Bielska-Lasota, G. Forjaz de Lacerda, M.J. Bento, C. Castro, A. Miranda, A. Mayer-da-Silva, C. Safaei Diba, M. Primic-Zakelj, M. Errezola, J. Bidaurrazaga, J.M. Díaz García, A.I. Marcos-Navarro, R. Marcos-Gragera, A. Izquierdo Font, M.J. Sanchez, E. Molina, C. Navarro, C. Moreno-Iribas, J. Galceran, M. Carulla, M. Lambe, S. Khan, M. Mousavi, C. Bouchardy, M. Usel, S.M. Ess, H. Frick, M. Lorez, C. Herrmann, A. Bordoni, A. Spitale, I. Konzelmann, O. Visser, V. Ho, R. Otter, M. Coleman, C. Allemani, B. Rachet, J. Rashbass, J. Broggio, J. Verne, A. Gavin, C. Donnelly, D.H. Brewster, D.W. Huws, C. White, Registre des cancers du Tarn, France, Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS), Registre général des cancers du Tarn, Centre Hospitalier Universitaire de Toulouse (CHU Toulouse), Dal Maso L., Tavilla A., Pacini F., Serraino D., van Dijk B.A.C., Chirlaque M.D., Capocaccia R., Larranaga N., Colonna M., Agius D., Ardanaz E., Rubio-Casadevall J., Kowalska A., Virdone S., Mallone S., Amash H., De Angelis R., Hackl M., Zielonke N., Van Eycken E., Henau K., Valerianova Z., Dimitrova N., Sekerija M., Dusek L., Zvolsky M., Storm H., Engholm G., Magi M., Aareleid T., Malila N., Seppa K., Velten M., Guizard A.V., Faivre J., Woronoff A.S., Tretarre B., Bossard N., Uhry Z., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Stabenow R., Luttmann S., Eberle A., Brenner H., Nennecke A., Engel J., Schubert-Fritschle G., Heidrich J., Holleczek B., Katalinic A., Jonasson J.G., Tryggvadottir L., Comber H., Mazzoleni G., Bulatko A., Buzzoni C., Giacomin A., Sutera Sardo A., Ferretti S., Mazzei A., Caldarella A., Gatta G., Sant M., Amati C., Baili P., Berrino F., Bonfarnuzzo S., Botta L., Di Salvo F., Foschi R., Margutti C., Meneghini E., Minicozzi P., Trama A., Zucchetto A., Caldora M., Carrani E., Francisci S., Pierannunzio D., Roazzi P., Rossi S., Santaquilani M., Pannozzo F., Busco S., Filiberti R.A., Vercelli M., Ricci P., Autelitano M., Spagnoli G., Cirilli C., Fusco M., Vitale M.F., Usala M., Vitale F., Ravazzolo B., Michiara M., Tumino R., Mangone L., Vicentini M., Falcini F., Iannelli A., Sechi O., Cesaraccio R., Piffer S., Madeddu A., Tisano F., Maspero S., Fanetti A.C., Zanetti R., Rosso S., Candela P., Scuderi T., Stracci F., Rocca A., Tagliabue G., Contiero P., Rugge M., Tognazzo S., Pildava S., Smailyte G., Calleja N., Johannesen T.B., Rachtan J., Gozdz S., Mezyk R., Blaszczyk J., Bebenek M., Bielska-Lasota M., Forjaz de Lacerda G., Bento M.J., Castro C., Miranda A., Mayer-da-Silva A., Safaei Diba C., Primic-Zakelj M., Errezola M., Bidaurrazaga J., Diaz Garcia J.M., Marcos-Navarro A.I., Marcos-Gragera R., Izquierdo Font A., Sanchez M.J., Molina E., Navarro C., Moreno-Iribas C., Galceran J., Carulla M., Lambe M., Khan S., Mousavi M., Bouchardy C., Usel M., Ess S.M., Frick H., Lorez M., Herrmann C., Bordoni A., Spitale A., Konzelmann I., Visser O., Ho V., Otter R., Coleman M., Allemani C., Rachet B., Rashbass J., Broggio J., Verne J., Gavin A., Donnelly C., Brewster D.H., Huws D.W., and White C.

Subjects
Registrie, Male, Cancer Research, IMPACT, Cancer registrie, [SDV]Life Sciences [q-bio], Papillary, 0302 clinical medicine, QUALITY-OF-LIFE, Residence Characteristics, Adenocarcinoma, Follicular, Cancer registries, Registries, Thyroid cancer, Thyroid Neoplasm, education.field_of_study, Relative survival, Incidence (epidemiology), Mortality rate, Incidence, Diagnosis-Related Group, EUROCARE, Europe, Adolescent, Adult, Aged, Carcinoma, Carcinoma, Papillary, Diagnosis-Related Groups, Female, Humans, Middle Aged, Sex Distribution, Thyroid Neoplasms, Young Adult, Oncology, PREVALENCE, 3. Good health, Thyroid Cancer, Papillary, 030220 oncology & carcinogenesis, Cohort, Human, medicine.medical_specialty, Population, GEOGRAPHICAL-DISTRIBUTION, UNITED-STATES, Socio-culturale, 030209 endocrinology & metabolism, Adenocarcinoma, RECENT TRENDS, 03 medical and health sciences, MANAGEMENT, medicine, education, Survival rate, business.industry, MORTALITY, Follicular, medicine.disease, Cancer registry, Surgery, MICROCARCINOMA, Residence Characteristic, business, Demography
Abstract

Background: Incidence rates of thyroid cancer (TC) increased in several countries during the last 30 years, while mortality rates remained unchanged, raising important questions for treatment and follow-up of TC patients. This study updates population-based estimates of relative survival (RS) after TC diagnosis in Europe by sex, country, age, period and histology.Methods: Data from 87 cancer registries in 29 countries were extracted from the EUROCARE-5 dataset. One-and 5-year RS were estimated using the cohort approach for 86,690 adult TC patients diagnosed in 2000-2007 and followed-up to 12/31/2008. RS trends in 1999-2007 and 10-year RS in 2005-2007 were estimated using the period approach.Results: In Europe 2000-2007, 5-year RS after TC was 88% in women and 81% in men. Survival rates varied by country and were strongly correlated (Pearson rho = 75%) with country-specific incidence rates. Five-year RS decreased with age (in women from > 95% at age 15-54 to 57% at age 75+), from 98% in women and 94% in men with papillary TC to 14% in women and 12% in men with anaplastic TC. Proportion of papillary TC varied by country and increased over time, while survival rates were similar across areas and periods. In 1999-2007, 5-year RS increased by five percentage points for all TCs but only by two for papillary and by four for follicular TC. Ten-year RS in 2005-2007 was 89% in women and 79% in men.Conclusions: The reported increasing TC survival trend and differences by area are mainly explained by the varying histological case-mix of cases. (C) 2017 Elsevier Ltd. All rights reserved.

Published
2017

12. Changes in dynamics of excess mortality rates and net survival after diagnosis of follicular lymphoma or diff use large B-cell lymphoma: comparison between European population-based data (EUROCARE-5)

Author

Bernard Rachet, Pamela Minicozzi, Laura Botta, Milena Sant, Christian Herrmann, Pascale Grosclaude, Giovanna Tagliabue, ROCH GIORGI, Mariano Santaquilani, Meneghini Elisabetta, Aurélien Belot, Roberta De Angelis, Stefano Ferretti, Silvia Francisci, Paolo Contiero, Alexander Katalinic, Neville Calleja, Franco Berrino, Laurent Remontet, Paolo Baili, David Brewster, BOSSARD Nadine, Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS), Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale (SESSTIM - U912 INSERM - Aix Marseille Univ - IRD), Institut de Recherche pour le Développement (IRD)-Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), Registre des hémopathies malignes de Côte d'Or, London School of Hygiene and Tropical Medicine (LSHTM), IRCCS Istituto Nazionale dei Tumori [Milano], Istituto Superiore di Sanità (ISS), Epidemiologie-Biostatistique [Bordeaux], Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Bordeaux Ségalen [Bordeaux 2], Institut Bergonié [Bordeaux], UNICANCER, CIC Bordeaux, Université Bordeaux Segalen - Bordeaux 2-Institut National de la Santé et de la Recherche Médicale (INSERM), CHU Caen, Normandie Université (NU)-Tumorothèque de Caen Basse-Normandie (TCBN), Université de Bourgogne (UB), CHU Dijon, Centre Hospitalier Universitaire de Dijon - Hôpital François Mitterrand (CHU Dijon), M Mägi, T Aareleid, M Velten, J Faivre, M Maynadié, A S Woronoff, B Tretarre, N Bossard, A Belot, M Colonna, B Lapôtre-Ledoux, P Grosclaude, H Brenner, A Nennecke, B Holleczek, A Katalinic, J G Jónasson, L Tryggvadóttir, G Mazzoleni, A Bulatko, C Buzzoni, A Giacomin, S Ferretti, G Gatta, M Sant, H Amash, C Amati, P Baili, F Berrino, S Bonfarnuzzo, L Botta, F Di Salvo, R Foschi, C Margutti, E Meneghini, P Minicozzi, A Trama, R De Angelis, M Caldora, R Capocaccia, E Carrani, S Francisci, S Mallone, D Pierannunzio, P Roazzi, S Rossi, M Santaquilani, A Tavilla, F Pannozzo, M Natali, L Bonelli, M Vercelli, C Marchesi, C Cirilli, M Fusco, M F Vitale, M Michiara, R Tumino, P Giorgi Rossi, M Vicentini, F Falcini, O Sechi, R Cesaraccio, S Piffer, G Tagliabue, P Contiero, G Smailyte, N Calleja, R Micallef, T B Johannesen, M Bielska-Lasota, C Safaei Diba, M Primic-Zakelj, M Errezola, N Larrañaga, R Marcos-Gragera, L Vilardell, M J Sanchez, E Molina, C Navarro, M D Chirlaque, C Moreno-Iribas, E Ardanaz, J Galceran, M Carulla, M Mousavi, S M Ess, H Frick, M Lorez, S M Ess, C Herrmann, I Konzelmann, O Visser, V Lemmens, R Otter, M Coleman, C Allemani, B Rachet, J Verne, N Easey, G Lawrence, T Moran, J Rashbass, M Roche, J Wilkinson, D H Brewster, D W Huws, C White, Institut de Recherche pour le Développement (IRD)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Aix Marseille Université (AMU), Istituto Superiore di Sanita [Rome], Biostatistiques santé, Département biostatistiques et modélisation pour la santé et l'environnement [LBBE], Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de Recherche en Informatique et en Automatique (Inria)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Laboratoire de Biométrie et Biologie Evolutive - UMR 5558 (LBBE), and Malbec, Odile

Subjects
Adult, Male, Pathology, medicine.medical_specialty, Pediatrics, Adolescent, [SDV]Life Sciences [q-bio], Follicular lymphoma, Autopsy, NO, minimum clinical recommendations, 03 medical and health sciences, Young Adult, 0302 clinical medicine, Internal medicine, medicine, follow up, Humans, 030212 general & internal medicine, Young adult, cancer survival, Lymphoma, Follicular, Non-Hodgkin lymphoma, Aged, Hematology, Wales, minimum clinical recommendations, Non-Hodgkin lymphoma, relative survival, cancer survival, follow up, business.industry, Cancer, relative survival, Middle Aged, medicine.disease, 3. Good health, Lymphoma, [SDV] Life Sciences [q-bio], Europe, Scotland, 030220 oncology & carcinogenesis, Female, Lymphoma, Large B-Cell, Diffuse, business, Diffuse large B-cell lymphoma, International Classification of Diseases for Oncology
Abstract

Summary Background Since 2001, the World Health Organization classification of tumours of haematopoietic and lymphoid tissues and the International Classification of Diseases for Oncology (third edition) have improved data collection for lymphoma subtypes in most European cancer registries and allowed reporting on the major non-Hodgkin lymphoma subtypes. Treatment of non-Hodgkin lymphoma has changed profoundly, benefiting patients with follicular lymphoma or diffuse large B-cell lymphoma. We aimed to compare dynamics of cancer mortality in patients with follicular lymphoma or diffuse large B-cell lymphoma in five large European areas using data for survival from the largest number of collaborative European population-based cancer registries (EUROCARE). Methods We considered follicular lymphoma and diffuse large B-cell lymphoma cases in patients aged older than 15 years diagnosed between Jan 1, 1996, and Dec 31, 2004, and recorded in 43 cancer registries in five areas: Scotland and Wales, and northern, central, eastern, and southern Europe. We excluded cases incidentally diagnosed at autopsy or known from death certificates only. The vital status could be updated on Dec 31, 2008, in all registries but the French ones (Dec 31, 2007). We obtained changes in net survival with the Pohar-Perme estimator and excess mortality rate with a flexible parametric model according to age and year of diagnosis. Findings We identified 13 988 follicular lymphoma and 25 320 diffuse large B-cell lymphoma cases. We noted improvements in 5-year net survival for all ages between the 1999–2001 and 2002–04 periods for both cancers (except for follicular lymphoma in Scotland and Wales and diffuse large B-cell lymphoma in eastern Europe). For follicular lymphoma, 5-year net survival in northern Europe was 64% (95% CI 58–71) in 1999–2001 versus 75% (69–80) for 2002–04, for Scotland and Wales, it was 71% (66–76) versus 68% (64–72), for central Europe, it was 64% (61–67) versus 72% (70–75), for southern Europe, it was 67% (63–70) versus 73% (70–76), and for eastern Europe, it was 50% (43–57) versus 61% (54–69). For diffuse large B-cell lymphoma, 5-year net survival in northern Europe was 41% (35–49) versus 58% (54–62), in Scotland and Wales, it was 44% (41–48) versus 52% (49–54), in central Europe, it was 46% (44–47) versus 50% (48–51), in southern Europe, it was 44% (42–47) versus 50% (48–52), and in eastern Europe, it was 47% (41–54) versus 46% (43–50). We noted the largest area disparity during the 2002–04 period between eastern and northern Europe. We noted a significant effect of the year of diagnosis on the excess mortality rate for all ages in all areas, except for diffuse large B-cell lymphoma in eastern Europe. The excess mortality rate was not constant during the follow-up period: we noted a high rate early for both lymphomas, except for follicular lymphoma in northern Europe. Interpretation Although survival for follicular lymphoma and diffuse large B-cell lymphoma is improving, the results from this study should foster the search for more and better means of improvement of access to adequate care than that at present, as there remains variation in survival between European regions. Study of the dynamics of the excess mortality rate seems to be a useful clinical indicator to help the practitioner's choice of optimum management of patients. Funding Compagnia di San Paolo, Fondazione Cariplo Italy, Italian Ministry of Health, European Commission, Registre des Hemopathies Malignes de Cote d'Or, and French Agence Nationale de la Recherche.

Published
2015

13. Survival in patients with primary liver cancer, gallbladder and extrahepatic biliary tract cancer and pancreatic cancer in Europe 1999- 2007: Results of EUROCARE-5

Author

Côme Lepage, Riccardo Capocaccia, Monika Hackl, Valerie Lemmens, Esther Molina, Daniela Pierannunzio, Milena Sant, Annalisa Trama, Jean Faivre, M. Hackl, N. Zielonke, W. Oberaigner, E. Van Eycken, K. Henau, Z. Valerianova, N. Dimitrova, M. Sekerija, M. Zvolský, L. Dušek, H. Storm, G. Engholm, M. Mägi, T. Aareleid, N. Malila, K. Seppä, M. Velten, X. Troussard, V. Bouvier, G. Launoy, A.V. Guizard, J. Faivre, A.M. Bouvier, P. Arveux, M. Maynadié, A.S. Woronoff, M. Robaszkiewicz, I. Baldi, A. Monnereau, B. Tretarre, N. Bossard, A. Belot, M. Colonna, F. Molinié, S. Bara, C. Schvartz, B. Lapôtre-Ledoux, P. Grosclaude, M. Meyer, R. Stabenow, S. Luttmann, A. Eberle, H. Brenner, A. Nennecke, J. Engel, G. Schubert-Fritschle, J. Kieschke, J. Heidrich, B. Holleczek, A. Katalinic, J.G. Jónasson, L. Tryggvadóttir, H. Comber, G. Mazzoleni, A. Bulatko, C. Buzzoni, A. Giacomin, A. Sutera Sardo, P. Mancuso, S. Ferretti, E. Crocetti, A. Caldarella, G. Gatta, M. Sant, H. Amash, C. Amati, P. Baili, F. Berrino, S. Bonfarnuzzo, L. Botta, F. Di Salvo, R. Foschi, C. Margutti, E. Meneghini, P. Minicozzi, A. Trama, D. Serraino, L. Dal Maso, R. De Angelis, M. Caldora, R. Capocaccia, E. Carrani, S. Francisci, S. Mallone, D. Pierannunzio, P. Roazzi, S. Rossi, M. Santaquilani, A. Tavilla, F. Pannozzo, S. Busco, L. Bonelli, M. Vercelli, V. Gennaro, P. Ricci, M. Autelitano, G. Randi, M. Ponz De Leon, C. Marchesi, C. Cirilli, M. Fusco, M.F. Vitale, M. Usala, A. Traina, R. Staiti, F. Vitale, B. Ravazzolo, M. Michiara, R. Tumino, P. Giorgi Rossi, E. Di Felice, F. Falcini, A. Iannelli, O. Sechi, R. Cesaraccio, S. Piffer, A. Madeddu, F. Tisano, S. Maspero, A.C. Fanetti, R. Zanetti, S. Rosso, P. Candela, T. Scuderi, F. Stracci, F. Bianconi, G. Tagliabue, P. Contiero, A.P. Dei Tos, S. Guzzinati, S. Pildava, G. Smailyte, N. Calleja, D. Agius, T.B. Johannesen, J. Rachtan, S. Gózdz, R. Mezyk, J. Blaszczyk, M. Bebenek, M. Bielska-Lasota, G. Forjaz de Lacerda, M.J. Bento, C. Castro, A. Miranda, A. Mayer-da-Silva, F. Nicula, D. Coza, C. Safaei Diba, M. Primic-Zakelj, E. Almar, C. Ramírez, M. Errezola, J. Bidaurrazaga, A. Torrella-Ramos, J.M. Díaz García, R. Jimenez-Chillaron, R. Marcos-Gragera, A. Izquierdo Font, M.J. Sanchez, D.Y.L. Chang, C. Navarro, M.D. Chirlaque, C. Moreno-Iribas, E. Ardanaz, J. Galceran, M. Carulla, M. Lambe, S. Khan, M. Mousavi, C. Bouchardy, M. Usel, S.M. Ess, H. Frick, M. Lorez, C. Herrmann, A. Bordoni, A. Spitale, I. Konzelmann, O. Visser, L. van der Geest, R. Otter, M. Coleman, C. Allemani, B. Rachet, J. Verne, N. Easey, G. Lawrence, T. Moran, J. Rashbass, M. Roche, J. Wilkinson, A. Gavin, C. Donnelly, D.H. Brewster, D.W. Huws, C. White, Lepage C., Capocaccia R., Hackl M., Lemmens V., Molina E., Pierannunzio D., Sant M., Trama A., Faivre J., Zielonke N., Oberaigner W., Van Eycken E., Henau K., Valerianova Z., Dimitrova N., Sekerija M., Zvolsky M., Dus?ek L., Storm H., Engholm G., Ma gi M., Aareleid T., Malila N., Seppa K., Velten M., Troussard X., Bouvier V., Launoy G., Guizard A.V., Bouvier A.M., Arveux P., Maynadie M., Woronoff A.S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Bossard N., Belot A., Colonna M., Molinie F., Bara S., Schvartz C., Lapo tre-Ledoux B., Grosclaude P., Meyer M., Stabenow R., Luttmann S., Eberle A., Brenner H., Nennecke A., Engel J., Schubert-Fritschle G., Kieschke J., Heidrich J., Holleczek B., Katalinic A., Jo nasson J.G., Tryggvadottir L., Comber H., Mazzoleni G., Bulatko A., Buzzoni C., Giacomin A., Sutera Sardo A., Mancuso P., Ferretti S., Crocetti E., Caldarella A., Gatta G., Amash H., Amati C., Baili P., Berrino F., Bonfarnuzzo S., Botta L., Di Salvo F., Foschi R., Margutti C., Meneghini E., Minicozzi P., Serraino D., Dal Maso L., De Angelis R., Caldora M., Carrani E., Francisci S., Mallone S., Roazzi P., Rossi S., Santaquilani M., Tavilla A., Pannozzo F., Busco S., Bonelli L., Vercelli M., Gennaro V., Ricci P., Autelitano M., Randi G., Ponz De Leon M., Marchesi C., Cirilli C., Fusco M., Vitale M.F., Usala M., Traina A., Staiti R., Vitale F., Ravazzolo B., Michiara M., Tumino R., Giorgi Rossi P., Di Felice E., Falcini F., Iannelli A., Sechi O., Cesaraccio R., Piffer S., Madeddu A., Tisano F., Maspero S., C. Fanetti A., Zanetti R., Rosso S., Candela P., Scuderi T., Stracci F., Bianconi F., Tagliabue G., Contiero P., Dei Tos A.P., Guzzinati S., Pildava S., Smailyte G., Calleja N., Agius D., Johannesen T.B., Rachtan J., Go zdz S., Me zyk R., Baszczyk J., Bebenek M., Bielska-Lasota M., Forjaz de Lacerda G., Bento M.J., Castro C., Miranda A., Mayer-da-Silva A., Nicula F., Coza D., Safaei Diba C., Primic-Zakelj M., Almar E., Ramirez C., Errezola M., Bidaurrazaga J., Torrella-Ramos A., Diaz Garcia J.M., Jimenez-Chillaron R., Marcos-Gragera R., Izquierdo Font A., Sanchez M.J., Chang D.Y.L., Navarro C., Chirlaque M.D., Moreno-Iribas C., Ardanaz E., Galceran J., Carulla M., Lambe M., Khan S., Mousavi M., Bouchardy C., Usel M., Ess S.M., Frick H., Lorez M., Herrmann C., Bordoni A., Spitale A., Konzelmann I., Visser O., van der Geest L., Otter R., Coleman M., Allemani C., Rachet B., Verne J., Easey N., Lawrence G., Moran T., Rashbass J., Roche M., Wilkinson J., Gavin A., Donnelly C., Brewster D.H., Huws D.W., and White C.

Subjects
Cancer Research, medicine.medical_specialty, Survival, Biliary tract cancer, Cancer registry, Europe, Pancreatic cancer, Primary liver cancer, Time trends in survival, Oncology, Population, Socio-culturale, Gastroenterology, Internal medicine, medicine, education, Survival analysis, education.field_of_study, Relative survival, business.industry, Gallbladder, Cancer, medicine.disease, medicine.anatomical_structure, Liver cancer, business
Abstract

Background The EUROCARE study collects and analyses survival data from population-based cancer registries (CRs) in Europe in order to provide data on between-country differences in survival and time trends in survival. Methods This study analyses data on liver cancer, gallbladder and extrahepatic biliary tract cancers (“biliary tract cancers”), and pancreatic cancer diagnosed in 2000–2007 from 88 CRs in 29 countries. Relative survival (RS) was estimated overall, by region, sex, age and period of diagnosis using the complete approach. Time trends in 5-year RS over 1999–2007 were also analysed using the period approach. Results The prognosis of the studied cancers was poor. Age-standardised 5-year RS was 12% for liver cancer, 17% for biliary tract cancers and 7% for pancreatic cancer. There were some between-country differences in survival. In general, RS was low in Eastern Europe and high in Central and Southern Europe. For all sites, 5-year RS was similar in men and women and decreased with advancing age. No substantial changes in survival were reported for pancreatic cancer over the period 1999–2007. On average, there was a crude increase in 5-year RS of 3 percentage points between the periods 1999–2001 and 2005–2007 for liver cancer and biliary tract cancers. Conclusions The major changes in imaging techniques over the study period for the diagnosis of the three studied cancers did not result in an improvement in the prognosis of these cancers. In the near future, new innovative treatments might be the best way to improve the prognosis in these cancers.

Published
2015

14. The EUROCARE-5 study on cancer survival in Europe 1999-2007: Database, quality checks and statistical analysis methods

Author

Silvia Rossi, Paolo Baili, Riccardo Capocaccia, Massimiliano Caldora, Eugenio Carrani, Pamela Minicozzi, Daniela Pierannunzio, Mariano Santaquilani, Annalisa Trama, Claudia Allemani, Aurelien Belot, Carlotta Buzzoni, Matthias Lorez, Roberta De Angelis, M. Hackl, N. Zielonke, W. Oberaigner, E. Van Eycken, K. Henau, Z. Valerianova, N. Dimitrova, M. Sekerija, M. Zvolský, L. Dušek, H. Storm, G. Engholm, M. Mägi, T. Aareleid, N. Malila, K. Seppä, M. Velten, X. Troussard, V. Bouvier, G. Launoy, A.V. Guizard, J. Faivre, A.M. Bouvier, P. Arveux, M. Maynadié, A.S. Woronoff, M. Robaszkiewicz, I. Baldi, A. Monnereau, B. Tretarre, N. Bossard, A. Belot, M. Colonna, F. Molinié, S. Bara, C. Schvartz, B. Lapôtre-Ledoux, P. Grosclaude, M. Meyer, R. Stabenow, S. Luttmann, A. Eberle, H. Brenner, A. Nennecke, J. Engel, G. Schubert-Fritschle, J. Kieschke, J. Heidrich, B. Holleczek, A. Katalinic, J.G. Jónasson, L. Tryggvadóttir, H. Comber, G. Mazzoleni, A. Bulatko, C. Buzzoni, A. Giacomin, A. Sutera Sardo, A. Mazzei, S. Ferretti, E. Crocetti, G. Manneschi, G. Gatta, M. Sant, H. Amash, C. Amati, P. Baili, F. Berrino, S. Bonfarnuzzo, L. Botta, F. Di Salvo, R. Foschi, C. Margutti, E. Meneghini, P. Minicozzi, A. Trama, D. Serraino, A. Zucchetto, R. De Angelis, M. Caldora, R. Capocaccia, E. Carrani, S. Francisci, S. Mallone, D. Pierannunzio, P. Roazzi, S. Rossi, M. Santaquilani, A. Tavilla, F. Pannozzo, M. Natali, L. Bonelli, M. Vercelli, V. Gennaro, P. Ricci, M. Autelitano, G. Randi, M. Ponz De Leon, C. Marchesi, C. Cirilli, M. Fusco, M.F. Vitale, M. Usala, A. Traina, M. Zarcone, F. Vitale, R. Cusimano, M. Michiara, R. Tumino, P. Giorgi Rossi, M. Vicentini, F. Falcini, A. Iannelli, O. Sechi, R. Cesaraccio, S. Piffer, A. Madeddu, F. Tisano, S. Maspero, A.C. Fanetti, R. Zanetti, S. Rosso, P. Candela, T. Scuderi, F. Stracci, A. Rocca, G. Tagliabue, P. Contiero, A.P. Dei Tos, S. Tognazzo, S. Pildava, G. Smailyte, N. Calleja, R. Micallef, T.B. Johannesen, J. Rachtan, S. Gózdz, R. Mezyk, J. Blaszczyk, K. Kepska, M. Bielska-Lasota, G. Forjaz de Lacerda, M.J. Bento, L. Antunes, A. Miranda, A. Mayer-da-Silva, F. Nicula, D. Coza, C. Safaei Diba, M. Primic-Zakelj, E. Almar, A. Mateos, M. Errezola, N. Larrañaga, A. Torrella-Ramos, J.M. Díaz García, A.I. Marcos-Navarro, R. Marcos-Gragera, L. Vilardell, M.J. Sanchez, E. Molina, C. Navarro, M.D. Chirlaque, C. Moreno-Iribas, E. Ardanaz, J. Galceran, M. Carulla, M. Lambe, S. Khan, M. Mousavi, C. Bouchardy, M. Usel, S.M. Ess, H. Frick, M. Lorez, C. Herrmann, A. Bordoni, A. Spitale, I. Konzelmann, V. Ho, S. Siesling, M. Coleman, C. Allemani, B. Rachet, J. Verne, N. Easey, G. Lawrence, T. Moran, J. Rashbass, M. Roche, J. Wilkinson, A. Gavin, D. Fitzpatrick, D.H. Brewster, D.W. Huws, C. White, R. Otter, Rossi S., Baili P., Capocaccia R., Caldora M., Carrani E., Minicozzi P., Pierannunzio D., Santaquilani M., Trama A., Allemani C., Belot A., Buzzoni C., Lorez M., De Angelis R., Zielonke N., Oberaigner W., Van Eycken E., Henau K., Valerianova Z., Dimitrova N., Sekerija M., Zvolsky M., Dus?ek L., Storm H., Engholm G., Magi M., Aareleid T., Malila N., Seppa K., Velten M., Troussard X., Bouvier V., Launoy G., Guizard A.V., Faivre J., Bouvier A.M., Arveux P., Maynadie M., Woronoff A.S., Robaszkiewicz M., Baldi I., Monnereau A., Tretarre B., Bossard N., Colonna M., Molinie F., Bara S., Schvartz C., Lapotre-Ledoux B., Grosclaude P., Meyer M., Stabenow R., Luttmann S., Eberle A., Brenner H., Nennecke A., Engel J., Schubert-Fritschle G., Kieschke J., Heidrich J., Holleczek B., Katalinic A., Jonasson J.G., Tryggvadottir L., Comber H., Mazzoleni G., Bulatko A., Giacomin A., Sutera Sardo A., Mazzei A., Ferretti S., Crocetti E., Manneschi G., Gatta G., Sant M., Amash H., Amati C., Berrino F., Bonfarnuzzo S., Botta L., Di Salvo F., Foschi R., Margutti C., Meneghini E., Serraino D., Zucchetto A., Francisci S., Mallone S., Roazzi P., Tavilla A., Pannozzo F., Natali M., Bonelli L., Vercelli M., Gennaro V., Ricci P., Autelitano M., Randi G., Ponz De Leon M., Marchesi C., Cirilli C., Fusco M., Vitale M.F., Usala M., Traina A., Zarcone M., Vitale F., Cusimano R., Michiara M., Tumino R., Giorgi Rossi P., Vicentini M., Falcini F., Iannelli A., Sechi O., Cesaraccio R., Piffer S., Madeddu A., Tisano F., Maspero S., Fanetti A.C., Zanetti R., Rosso S., Candela P., Scuderi T., Stracci F., Rocca A., Tagliabue G., Contiero P., Dei Tos A.P., Tognazzo S., Pildava S., Smailyte G., Calleja N., Micallef R., Johannesen T.B., Rachtan J., Gozdz S., Me zyk R., Baszczyk J., Kepska K., Bielska-Lasota M., Forjaz de Lacerda G., Bento M.J., Antunes L., Miranda A., Mayer-da-Silva A., Nicula F., Coza D., Safaei Diba C., Primic-Zakelj M., Almar E., Mateos A., Errezola M., Larranaga N., Torrella-Ramos A., Diaz Garcia J.M., Marcos-Navarro A.I., Marcos-Gragera R., Vilardell L., Sanchez M.J., Molina E., Navarro C., Chirlaque M.D., Moreno-Iribas C., Ardanaz E., Galceran J., Carulla M., Lambe M., Khan S., Mousavi M., Bouchardy C., Usel M., Ess S.M., Frick H., Herrmann C., Bordoni A., Spitale A., Konzelmann I., Ho V., Siesling S., Coleman M., Rachet B., Verne J., Easey N., Lawrence G., Moran T., Rashbass J., Roche M., Wilkinson J., Gavin A., Fitzpatrick D., Brewster D.H., Huws D.W., White C., and Otter R.

Subjects
Cancer Research, Survival, Population, Socio-culturale, Population-based registries, Population-based registrie, Quality checks, Cancer, EUROCARE, Europe, Oncology, Medicine, education, education.field_of_study, Relative survival, business.industry, Population size, Comparability, Percentage point, medicine.disease, Quality check, Data quality, Cohort, business, Demography
Abstract

Background Since 25 years the EUROCARE study monitors the survival of cancer patients in Europe through centralised collection, quality check and statistical analysis of population-based cancer registries (CRs) data. The European population covered by the study increased remarkably in the latest round. The study design and statistical methods were also changed to improve timeliness and comparability of survival estimates. To interpret the EUROCARE-5 results on adult cancer patients better here we assess the impact of these changes on data quality and on survival comparisons. Methods In EUROCARE-5 the survival differences by area were studied applying the complete cohort approach to data on nearly nine million cancer patients diagnosed in 2000–2007 and followed up to 2008. Survival time trends were analysed applying the period approach to data on about 10 million cancer cases diagnosed from 1995 to 2007 and followed up to 2008. Differently from EUROCARE-4, multiple primary cancers were included and relative survival was estimated with the Ederer II method. Results EUROCARE-5 covered a population of 232 million resident persons, corresponding to 50% of the 29 participating countries. The population coverage increased particularly in Eastern Europe. Cases identified from death certificate only (DCO) were on average 2.9%, range 0–12%. Microscopically confirmed cases amounted to over 85% in most CRs. Compared to previous methods, including multiple cancers and using the Ederer II estimator reduced survival estimates by 0.4 and 0.3 absolute percentage points, on average. Conclusions The increased population size and registration coverage of the EUROCARE-5 study ensures more robust and comparable estimates across European countries. This enlargement did not impact on data quality, which was generally satisfactory. Estimates may be slightly inflated in countries with high or null DCO proportions, especially for poor prognosis cancers. The updated methods improved the comparability of survival estimates between recently and long-term established registries and reduced biases due to informative censoring.

Published
2015

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