{"entity":{"id":"paper-gatta-eur-j-cancer","kind":"paper","name":"Rare cancers are not so rare: the rare cancer burden in Europe","aka":[],"tldr":"Paper cited by one bottleneck page and twelve idea pages, indexed on Europe PMC as PubMed record 22033323 and published in European Journal of Cancer; the citing pages link this DOI, which is how the record was matched.","summary":"Purpose: Epidemiologic information on rare cancers is scarce. The project Surveillance of Rare Cancers in Europe (RARECARE) provides estimates of the incidence, prevalence and survival of rare cancers in Europe based on a new and comprehensive list of these diseases.\n\nMaterials and methods: RARECARE analysed population-based cancer registry (CR) data on European patients diagnosed from 1988 to 2002, with vital status information available up to 31st December 2003 (latest date for which most CRs had verified data). The mean population covered was about 162,000,000. Cancer incidence and survival rates for 1995-2002 and prevalence at 1st January 2003 were estimated.\n\nResults: Based on the RARECARE definition (incidence <6/100,000/year), the estimated annual incidence rate of all rare cancers in Europe was about 108 per 100,000, corresponding to 541,000 new diagnoses annually or 22% of all cancer diagnoses. Five-year relative survival was on average worse for rare cancers (47%) than common cancers (65%). About 4,300,000 patients are living today in the European Union with a diagnosis of a rare cancer, 24% of the total cancer prevalence.\n\nConclusion: Our estimates of the rare cancer burden in Europe provide the first indication of the size of the public health problem due to these diseases and constitute a useful base for further research. Centres of excellence for rare cancers or groups of rare cancers could provide the necessary organisational structure and critical mass for carrying out clinical trials and developing alternative approaches to clinical experimentation for these cancers.\n\nIndexed on Europe PMC as PubMed record 22033323 (DOI 10.1016/j.ejca.2011.08.008). Matched by DOI alone: one bottleneck page and twelve idea pages cite this DOI among their external links (the pages are listed under Related), and this page was written so that the citation resolves inside OnCo. No figure has been checked by an editor.","asOf":"2026-09-22","links":[{"label":"Eur J Cancer 2011","url":"https://doi.org/10.1016/j.ejca.2011.08.008"},{"label":"PubMed","url":"https://pubmed.ncbi.nlm.nih.gov/22033323/"},{"label":"Europe PMC","url":"https://europepmc.org/article/MED/22033323"}],"tags":["europepmc-ingest"],"related":["b-rare-cancers","idea-bio2-rare-cancer-telepathology-network","idea-bio2-shared-compound-access-pool","idea-bio2-bayesian-borrowing-acceptance","idea-bio2-rare-tumour-model-bank","idea-bio2-paediatric-first-development","idea-bio2-mechanism-defined-baskets","idea-bio2-patient-partnered-rare-commons","idea-moon-rare-cancer-global-network","idea-bio2-rare-cancer-umbrella-platform","idea-moon-open-source-oncology-drug-discovery","idea-bio2-registry-embedded-randomisation","idea-bio2-functional-precision-rare"],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":["european-journal-of-cancer"],"dependsOn":[],"notes":[],"journal":"European Journal of Cancer","year":2011,"doi":"10.1016/j.ejca.2011.08.008","pmid":"22033323","authors":"Gatta G, van der Zwan JM, Casali PG, et al.","paperType":"observational","findings":[],"whatItMeans":"One bottleneck page and twelve idea pages on OnCo cite this paper by its DOI; this record gives the citation a page of its own so a reader can follow it without leaving OnCo. Read the abstract above alongside the citing pages listed under Related; the record was created automatically from the Europe PMC entry and its figures have not been checked by hand.","caveats":["Matched to the citing OnCo records by DOI alone; the summary reproduces the Europe PMC abstract and no figure has been verified against the full paper."]},"route":"/key-papers/paper-gatta-eur-j-cancer/","neighbours":{"bottleneck":[{"id":"b-rare-cancers","kind":"bottleneck","name":"Rare and paediatric cancers without markets","route":"/bottlenecks/b-rare-cancers/"}],"idea":[{"id":"idea-bio2-rare-cancer-telepathology-network","kind":"idea","name":"A same-week expert second opinion for every rare cancer diagnosis","route":"/ideas/idea-bio2-rare-cancer-telepathology-network/"},{"id":"idea-bio2-shared-compound-access-pool","kind":"idea","name":"A shared compound library that rare cancer researchers can actually use","route":"/ideas/idea-bio2-shared-compound-access-pool/"},{"id":"idea-bio2-bayesian-borrowing-acceptance","kind":"idea","name":"Agree in advance how to borrow evidence between similar rare cancers","route":"/ideas/idea-bio2-bayesian-borrowing-acceptance/"},{"id":"idea-bio2-rare-tumour-model-bank","kind":"idea","name":"An open model bank for the rare tumours nobody has models for","route":"/ideas/idea-bio2-rare-tumour-model-bank/"},{"id":"idea-bio2-paediatric-first-development","kind":"idea","name":"Develop drugs in children first when the target is a children's target","route":"/ideas/idea-bio2-paediatric-first-development/"},{"id":"idea-bio2-mechanism-defined-baskets","kind":"idea","name":"Group trials by broken mechanism, not by organ or single mutation","route":"/ideas/idea-bio2-mechanism-defined-baskets/"},{"id":"idea-bio2-patient-partnered-rare-commons","kind":"idea","name":"Let patients themselves donate their records and samples for ultra-rare cancers","route":"/ideas/idea-bio2-patient-partnered-rare-commons/"},{"id":"idea-moon-rare-cancer-global-network","kind":"idea","name":"One global rare cancer network with n-of-1 and Bayesian trial frameworks","route":"/ideas/idea-moon-rare-cancer-global-network/"},{"id":"idea-bio2-rare-cancer-umbrella-platform","kind":"idea","name":"One standing umbrella trial for all rare cancers in a country","route":"/ideas/idea-bio2-rare-cancer-umbrella-platform/"},{"id":"idea-moon-open-source-oncology-drug-discovery","kind":"idea","name":"Open-source drug discovery to clinical proof of concept for neglected cancers","route":"/ideas/idea-moon-open-source-oncology-drug-discovery/"},{"id":"idea-bio2-registry-embedded-randomisation","kind":"idea","name":"Randomise inside the registry that already follows every patient","route":"/ideas/idea-bio2-registry-embedded-randomisation/"},{"id":"idea-bio2-functional-precision-rare","kind":"idea","name":"Test drugs on the patient's own cancer cells when there is no trial to join","route":"/ideas/idea-bio2-functional-precision-rare/"}],"journal":[{"id":"european-journal-of-cancer","kind":"journal","name":"European Journal of Cancer","route":"/journals/european-journal-of-cancer/"}]}}