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Cited by 517Global Cancer Incidence and ScreeningAdvances in Oncology and RadiotherapyCOVID-19 and healthcare impacts

The DOI matches its Crossref record; 22 of the 22 references it cites were found in a registry or an index.

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

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Gatta, Gemma, Capocaccia, Riccardo, Botta, Laura, Mallone, Sandra, De Angelis, Roberta, Ardanaz, Eva, Comber, Harry, Dimitrova, Nadya, Leinonen, Maarit K, Siesling, Sabine, van der Zwan, Jan M, Van Eycken, Liesbet, Visser, Otto, Žakelj, Maja P, Anderson, Lesley A, Bella, Francesca, Kaire, Innos, Otter, Renée, Stiller, Charles A, Trama, Annalisa, Hackl, Monika, Henau, Kris, Van Damme, Nancy, Valerianova, Zdravka, Sekerija, Mario, Dušek, Ladislav, Mägi, Margit, Paapsi, Keiu, Malila, Nea, Velten, Michel, Troussard, Xavier, Bouvier, Veronique, Guizard, Anne-Valérie, Bouvier, Anne-Marie, Arveux, Patrick, Maynadié, Marc, Woronoff, Anne-Sophie, Robaszkiewicz, Michel, Baldi, Isabelle, Monnereau, Alain, Tretarre, Brigitte, Colonna, Marc, Molinié, Florence, Bara, Simona, Schvartz, Claire, Lapôtre-Ledoux, Bénédicte, Grosclaude, Pascale, Stabenow, Roland, Luttmann, Sabine, Nennecke, Alice, Engel, Jutta, SchubertFritschle, Gabriele, Heidrich, Jan, Holleczek, Bernd, Jónasson, Jón Gunnlaugur, Clough-Gorr, Kerri, Mazzoleni, Guido, Giacomin, Adriano, Sardo, Antonella Sutera, Barchielli, Alessandro, Serraino, Diego, Collarile, Paolo, Pannozzo, Fabio, Ricci, Paolo, Autelitano, Mariangela, Spagnoli, Gianbattista, Fusco, Mario, Usala, Mario, Vitale, Francesco, Michiara, Maria, Tumino, Rosario, Mangone, Lucia, Falcini, Fabio, Ferretti, Stefano, Filiberti, Rosa Angela, Marani, Enza, Caiazzo, Anna Luisa, Iannelli, Arturo, Sensi, Flavio, Piffer, Silvano, Gentilini, Maria, Madeddu, Anselmo, Colanino, Antonino Ziino, Maspero, Sergio, Candela, Pina, Stracci, Fabrizio, Tagliabue, Giovanna, Rugge, Massimo, Baili, Paolo, Minicozzi, Pamela, Sant, Milena, Tereanu, Carmen, Francisci, Silvia, Tavilla, Andrea, Pierannunzio, Daniela, Rossi, Silvia, Santaquilani, Mariano, Knijn, Arnold, Pildava, Santa, Smailyte, Giedre, Calleja, Neville, Agius, Dominic, Johannesen, Tom Børge, Rachtan, Jadwiga, Gózdz, Stanislaw, Blaszczyk, Jerzy, Kepska, Kamila, Lacerda, Gonçalo Forjaz de, Bento, Maria José, Miranda, Ana, Diba, Chakameh Safaei, Žagar, Tina, Almar, Enrique, Larrañaga, Nerea, Munain, Arantza Lopez de, Torrella-Ramos, Ana, García, José María Díaz, Marcos-Gragera, Rafael, Sanchez, Maria Josè, Navarro, Carmen, Salmeron, Diego, Moreno-Iribas, Conchi, Galceran, Jaume, Carulla, Marià, Mousavi, Mohsen, Bouchardy, Christine, Ess, Silvia M., Bordoni, Andrea, Konzelmann, Isabelle, Rashbass, Jem, Gavin, Anna, Brewster, David H, Huws, Dyfed Wyn, Ho, Vincent KY, Benhamou, Ellen·2017·The Lancet Oncology
DOI 10.1016/s1470-2045(17)30445-x
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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.Funding The European Commission (Chafea).

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  1. Ederer, 1961, The relative survival: a statistical methodology, Natl Cancer Inst Monogr, 6, 101

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Authors
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., Žakelj, 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., Dušek, L., Mägi, M., Paapsi, K., Malila, N., Velten, M., Troussard, X., Bouvier, V., Guizard, A.-V., Bouvier, A.-M., Arveux, P., Maynadié, M., Woronoff, A.-S., Robaszkiewicz, M., Baldi, I., Monnereau, A., Tretarre, B., Colonna, M., Molinié, F., Bara, S., Schvartz, C., Lapôtre-Ledoux, B., Grosclaude, P., Stabenow, R., Luttmann, S., Nennecke, A., Engel, J., SchubertFritschle, G., Heidrich, J., Holleczek, B., Jónasson, 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., Gózdz, S., Blaszczyk, J., Kepska, K., Lacerda, G. F. D., Bento, M. J., Miranda, A., Diba, C. S., Žagar, T., Almar, E., Larrañaga, N., Munain, A. L. D., Torrella-Ramos, A., García, 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., & Benhamou, E.
Affiliations
  • Fondazione IRCCS Istituto Nazionale dei Tumori (IT)
  • Istituto Superiore di Sanità (IT)
  • National Cancer Registry (IE)
  • Finnish Cancer Registry (FI)
  • Netherlands Comprehensive Cancer Organisation (NL)
  • Institute of Oncology Ljubljana (SI)
  • Queen's University Belfast (GB)
  • Policlinico Universitario di Catania (IT)
  • Institut Scientifique de Santé Publique (BE)
  • Public Health England (GB)
  • Instituto de Salud Pública de Navarra (ES)
Corresponding author
Gatta, Gemma
ORCID
Venue
The Lancet Oncology
Publisher
Elsevier BV
Published
2017-08
Volume
18
Issue
8
Pages
1022-1039
ISSN
1470-2045 (ISSN-L)
DOI
10.1016/s1470-2045(17)30445-x
OpenAlex
W2729284305
Cited by
516
References
22
Citations by year
2026: 60 · 2025: 82 · 2024: 81 · 2023: 71 · 2022: 64 · 2021: 52 · 2020: 47 · 2019: 27 · 2018: 24 · 2017: 6
FWCI
12.46
Type
journal article
Language
en
Update notices
erratum (2017-08-01)
Open access
Licence
Locations
  • The Lancet Oncology (publishedVersion)
  • PubMed (publishedVersion)
  • OAR@UM (University of Malta) (submittedVersion, other-oa)
  • HAL (submittedVersion)
  • Nova Science Publishers (Nova Science Publishers, Inc.) (submittedVersion)
  • Research Portal (Queen's University Belfast) (submittedVersion, other-oa)
  • Institutional Research Information System University of Ferrara (University of Ferrara) (submittedVersion, cc-by)
  • Padua Research Archive (University of Padova) (submittedVersion)
Funders
European Commission through the Consumers, Health, Agriculture and Food Executive Agency (Grant No. 2000111201)
Topics
  • Health Sciences › Medicine › Oncology › Global Cancer Incidence and Screening
  • Health Sciences › Medicine › Radiology, Nuclear Medicine and Imaging › Advances in Oncology and Radiotherapy
  • Health Sciences › Medicine › Oncology › COVID-19 and healthcare impacts
Keywords
rare tumor, cancer incidence, cancer survival, cancer registry, incidence trends, sarcoma, Europe, referral patterns, healthcare resource allocation, cancer care costs
MeSH terms
Cancer Care Facilities, Delivery of Health Care, Europe, Female, Hospitalization, Humans, Male, Neoplasms, Registries, Incidence, Survival Rate, Rare Diseases

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