TY  - JOUR
AU  - Fernandez-Cuesta, L.
AU  - Voegele, C.
AU  - Hemon, B.
AU  - Alcala, K.
AU  - Aune, D.
AU  - Caini, S.
AU  - Casalone, E.
AU  - Cross, A. J.
AU  - Ferrari, P.
AU  - Girard, N.
AU  - Katzke, Verena
AU  - van Leeuwaarde, R. S.
AU  - Matullo, G.
AU  - Melin, B.
AU  - Murphy, G.
AU  - Viallon, V.
AU  - Walter, T.
AU  - Gunter, M. J.
AU  - Trama, A.
AU  - Alcala, N.
AU  - Foll, M.
TI  - The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research.
JO  - ESMO Rare Cancers
VL  - 2
CY  - -
PB  - Elsevier
M1  - DKFZ-2025-01467
SP  - 100014
PY  - 2025
N1  - ESMO Rare Cancers (ESMO Rare Cancers) = 3050-4619 (import from CrossRef, PubMed, , Journals: inrepo02.dkfz.de)
AB  - The 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.
KW  - EPIC (Other)
KW  - R Shiny (Other)
KW  - cancer epidemiology (Other)
KW  - database (Other)
KW  - head and neck (Other)
KW  - rare cancers (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:40661340
C2  - pmc:PMC12257713
DO  - DOI:10.1016/j.esmorc.2025.100014
UR  - https://inrepo02.dkfz.de/record/303020
ER  -