Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study
Open accessAbstract
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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Translating the capabilities of current patch-based foundation models to address patient- and slide-level clinical challenges remains complex due to the immense scale of gigapixel WSIs, compounded by the small size of patient cohorts in real-world evidence, especially for rare diseases with limited training data.
“However, translating the capabilities of current patch-based foundation models to address patient- and slide-level clinical challenges still remains complex due to the immense scale of gigapixel WSIs, compounded by the small size of patient cohorts in real-world evidence39–42, especially for rare diseases with limited training data43–45.”
From A multimodal whole-slide foundation model for pathology (2025) · cites this paper as [43]
The Introduction (page not available) says that the low numbers of rare cancers make clinical research difficult: trials are rare, and building knowledge and expertise is hard. This supports the rarity-related data constraint, but the paper does not address limited machine-learning training data or the difficulty of applying patch-based models to whole-slide images. (LLM, conf=0.84)
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Self-citation
- 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
- Gatta, Gemma
- Capocaccia, Riccardo
- Botta, Laura
- Mallone, Sandra
- Comber, Harry
- Dimitrova, Nadya
- Leinonen, Maarit K
- Siesling, Sabine
- Visser, Otto
- Anderson, Lesley A
- Stiller, Charles A
- Trama, Annalisa
- Dušek, Ladislav
- Mägi, Margit
- Paapsi, Keiu
- Malila, Nea
- Troussard, Xavier
- Guizard, Anne-Valérie
- Bouvier, Anne-Marie
- Arveux, Patrick
- Maynadié, Marc
- Woronoff, Anne-Sophie
- Robaszkiewicz, Michel
- Baldi, Isabelle
- Monnereau, Alain
- Colonna, Marc
- Molinié, Florence
- Grosclaude, Pascale
- Luttmann, Sabine
- Nennecke, Alice
- Mazzoleni, Guido
- Serraino, Diego
- Vitale, Francesco
- Tumino, Rosario
- Falcini, Fabio
- Ferretti, Stefano
- Filiberti, Rosa Angela
- Piffer, Silvano
- Tagliabue, Giovanna
- Rugge, Massimo
- Baili, Paolo
- Minicozzi, Pamela
- Sant, Milena
- Francisci, Silvia
- Tavilla, Andrea
- Pierannunzio, Daniela
- Rossi, Silvia
- Santaquilani, Mariano
- Knijn, Arnold
- Pildava, Santa
- Calleja, Neville
- Rachtan, Jadwiga
- Miranda, Ana
- Žagar, Tina
- Almar, Enrique
- Larrañaga, Nerea
- García, José María Díaz
- Navarro, Carmen
- Bouchardy, Christine
- Ess, Silvia M.
- Gavin, Anna
- Brewster, David H
- Huws, Dyfed Wyn
- Ho, Vincent KY
- Venue
- The Lancet Oncology
- Publisher
- Elsevier BV
- Published
- 2017-08
- Volume
- 18
- Issue
- 8
- Pages
- 1022-1039
- ISSN
- 1470-2045 (ISSN-L)
- 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
- bronze
- doi.org
- 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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