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@ARTICLE{FernandezCuesta:303020,
      author       = {L. Fernandez-Cuesta and C. Voegele and B. Hemon and K.
                      Alcala and D. Aune and S. Caini and E. Casalone and A. J.
                      Cross and P. Ferrari and N. Girard and V. Katzke$^*$ and R.
                      S. van Leeuwaarde and G. Matullo and B. Melin and G. Murphy
                      and V. Viallon and T. Walter and M. J. Gunter and A. Trama
                      and N. Alcala and M. Foll},
      title        = {{T}he {E}uropean {P}rospective {I}nvestigation into
                      {C}ancer and {N}utrition {C}ohort ({EPIC}): a gateway to
                      rare cancer epidemiological research.},
      journal      = {ESMO Rare Cancers},
      volume       = {2},
      address      = {-},
      publisher    = {Elsevier},
      reportid     = {DKFZ-2025-01467},
      pages        = {100014},
      year         = {2025},
      note         = {ESMO Rare Cancers (ESMO Rare Cancers) = 3050-4619 (import
                      from CrossRef, PubMed, , Journals: inrepo02.dkfz.de)},
      abstract     = {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.},
      keywords     = {EPIC (Other) / R Shiny (Other) / cancer epidemiology
                      (Other) / database (Other) / head and neck (Other) / rare
                      cancers (Other)},
      cin          = {C020},
      cid          = {I:(DE-He78)C020-20160331},
      pnm          = {313 - Krebsrisikofaktoren und Prävention (POF4-313)},
      pid          = {G:(DE-HGF)POF4-313},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40661340},
      pmc          = {pmc:PMC12257713},
      doi          = {10.1016/j.esmorc.2025.100014},
      url          = {https://inrepo02.dkfz.de/record/303020},
}