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000303020 0247_ $$2doi$$a10.1016/j.esmorc.2025.100014
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000303020 037__ $$aDKFZ-2025-01467
000303020 041__ $$aEnglish
000303020 1001_ $$aFernandez-Cuesta, L.$$b0
000303020 245__ $$aThe European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research.
000303020 260__ $$a-$$bElsevier$$c2025
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000303020 500__ $$aESMO Rare Cancers (ESMO Rare Cancers) = 3050-4619 (import from CrossRef, PubMed, , Journals: inrepo02.dkfz.de)
000303020 520__ $$aThe intrinsic limitations of studying rare cancers poses challenges to undertaking studies with adequate statistical power. Therefore, efforts are needed to exploit available, high-quality resources. The European Prospective Investigation into Cancer and Nutrition (EPIC) is a large-scale longitudinal cohort with great potential for rare cancer research.We have used the EPIC data, which includes lifestyle, diet, and health information, on ∼520 000 participants recruited across Europe. Rare cancers were identified according to the RARE CAncer REgistry network (RARECAREnet) classification, which includes incidence-based categorization and detailed morphological and site-specific information.An interactive R Shiny web application was developed to explore EPIC data interactively, available at https://epic-rare-cancers-explorer.opendata.iarc.who.int. Among the EPIC participants, 11 450 incident cases of rare cancers were identified, with data currently available for 8851 of them, encompassing a wide range of cancer sites and morphologies. Sex ratios and incidence rates align with previously reported statistics. The R Shiny web application was designed for preliminary data analysis and hypothesis generation, aiding researchers in assessing the feasibility and potential of epidemiological studies. Taking head and neck cancers as a use case, we confirmed the strong association of these tumors with tobacco and alcohol consumption, proving the suitability of EPIC for identifying risk factors for rare cancers. However, it is important to note that, as with all observational studies, the associations reported in this article do not establish causality.The development of the EPIC rare cancers database, accompanied by the development of an interactive web application, represents a significant step forward in rare cancer research embedded within a large-scale population-based cohort. It is therefore vital to promote awareness of this resource within the research community.
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000303020 650_7 $$2Other$$aEPIC
000303020 650_7 $$2Other$$aR Shiny
000303020 650_7 $$2Other$$acancer epidemiology
000303020 650_7 $$2Other$$adatabase
000303020 650_7 $$2Other$$ahead and neck
000303020 650_7 $$2Other$$arare cancers
000303020 7001_ $$aVoegele, C.$$b1
000303020 7001_ $$aHemon, B.$$b2
000303020 7001_ $$aAlcala, K.$$b3
000303020 7001_ $$aAune, D.$$b4
000303020 7001_ $$aCaini, S.$$b5
000303020 7001_ $$aCasalone, E.$$b6
000303020 7001_ $$aCross, A. J.$$b7
000303020 7001_ $$aFerrari, P.$$b8
000303020 7001_ $$aGirard, N.$$b9
000303020 7001_ $$0P:(DE-He78)fb68a9386399d72d84f7f34cfc6048b4$$aKatzke, Verena$$b10$$udkfz
000303020 7001_ $$avan Leeuwaarde, R. S.$$b11
000303020 7001_ $$aMatullo, G.$$b12
000303020 7001_ $$aMelin, B.$$b13
000303020 7001_ $$aMurphy, G.$$b14
000303020 7001_ $$aViallon, V.$$b15
000303020 7001_ $$aWalter, T.$$b16
000303020 7001_ $$aGunter, M. J.$$b17
000303020 7001_ $$aTrama, A.$$b18
000303020 7001_ $$aAlcala, N.$$b19
000303020 7001_ $$aFoll, M.$$b20
000303020 773__ $$0PERI:(DE-600)3219785-8$$a10.1016/j.esmorc.2025.100014$$gVol. 2, p. 100014 -$$p100014$$tESMO Rare Cancers$$v2$$y2025
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