The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research

L Fernandez-Cuesta; C Voegele; B Hemon; K Alcala; D Aune; S Caini; E Casalone; A J Cross; P Ferrari; N Girard; V Katzke; R S van Leeuwaarde; G Matullo; B Melin; G Murphy; V Viallon; T Walter; M J Gunter; A Trama; N Alcala; M Foll

doi:10.1016/j.esmorc.2025.100014

The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research

L Fernandez-Cuesta^*, C Voegele, B Hemon, K Alcala, D Aune, S Caini, E Casalone, A J Cross, P Ferrari, N Girard, V Katzke, R S van Leeuwaarde, G Matullo, B Melin, G Murphy, V Viallon, T Walter, M J Gunter, A Trama, N AlcalaM Foll

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

BACKGROUND: 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.

MATERIALS AND METHODS: 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.

RESULTS: 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.

CONCLUSION: 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.

Original language	English
Article number	100014
Journal	ESMO rare cancers
Volume	2
DOIs	https://doi.org/10.1016/j.esmorc.2025.100014
Publication status	Published - Jun 2025

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Fernandez-Cuesta, L., Voegele, C., Hemon, B., Alcala, K., Aune, D., Caini, S., Casalone, E., Cross, A. J., Ferrari, P., Girard, N., Katzke, V., van Leeuwaarde, R. S., Matullo, G., Melin, B., Murphy, G., Viallon, V., Walter, T., Gunter, M. J., Trama, A., ... Foll, M. (2025). The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research. ESMO rare cancers, 2, Article 100014. https://doi.org/10.1016/j.esmorc.2025.100014

@article{764b398ccd314b279d41e2222313282e,

title = "The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research",

abstract = "BACKGROUND: 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.MATERIALS AND METHODS: 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.RESULTS: 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.CONCLUSION: 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.",

author = "L Fernandez-Cuesta and C Voegele and B Hemon and K Alcala and D Aune and S Caini and E Casalone and Cross, \{A J\} and P Ferrari and N Girard and V Katzke and \{van Leeuwaarde\}, \{R S\} and G Matullo and B Melin and G Murphy and V Viallon and T Walter and Gunter, \{M J\} and A Trama and N Alcala and M Foll",

note = "{\textcopyright} 2025 Published by Elsevier Ltd on behalf of European Society for Medical Oncology.",

year = "2025",

month = jun,

doi = "10.1016/j.esmorc.2025.100014",

language = "English",

volume = "2",

}

Fernandez-Cuesta, L, Voegele, C, Hemon, B, Alcala, K, Aune, D, Caini, S, Casalone, E, Cross, AJ, Ferrari, P, Girard, N, Katzke, V, van Leeuwaarde, RS, Matullo, G, Melin, B, Murphy, G, Viallon, V, Walter, T, Gunter, MJ, Trama, A, Alcala, N & Foll, M 2025, 'The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research', ESMO rare cancers, vol. 2, 100014. https://doi.org/10.1016/j.esmorc.2025.100014

TY - JOUR

T1 - The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC)

T2 - a gateway to rare cancer epidemiological research

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, V

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

PY - 2025/6

Y1 - 2025/6

N2 - BACKGROUND: 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.MATERIALS AND METHODS: 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.RESULTS: 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.CONCLUSION: 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.

AB - BACKGROUND: 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.MATERIALS AND METHODS: 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.RESULTS: 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.CONCLUSION: 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.

U2 - 10.1016/j.esmorc.2025.100014

DO - 10.1016/j.esmorc.2025.100014

M3 - Article

C2 - 40661340

SN - 3050-4619

VL - 2

JO - ESMO rare cancers

JF - ESMO rare cancers

M1 - 100014

ER -

The European Prospective Investigation into Cancer and Nutrition Cohort (EPIC): a gateway to rare cancer epidemiological research

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