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, Alcala N, Foll M
Rare Cancers Genomic Team, Genomic Epidemiology Branch, International Agency for Research on Cancer (IARC-WHO), Lyon, France.
Nutrition and Metabolism Branch, International Agency for Research on Cancer (IARC-WHO), Lyon, France.
ESMO Rare Cancers. 2025 Jun;2:None. doi: 10.1016/j.esmorc.2025.100014.
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.
研究罕见癌症存在内在局限性,这给开展具有足够统计效力的研究带来了挑战。因此,需要努力利用现有的高质量资源。欧洲癌症与营养前瞻性调查(EPIC)是一个大规模纵向队列,在罕见癌症研究方面具有巨大潜力。
我们使用了EPIC数据,该数据包含了欧洲各地招募的约520,000名参与者的生活方式、饮食和健康信息。根据罕见癌症登记网络(RARECAREnet)分类来识别罕见癌症,该分类包括基于发病率的分类以及详细的形态学和特定部位信息。
开发了一个交互式R Shiny网络应用程序,可通过https://epic-rare-cancers-explorer.opendata.iarc.who.int交互式地探索EPIC数据。在EPIC参与者中,识别出11450例罕见癌症病例,目前有8851例的数据可用,涵盖了广泛的癌症部位和形态。性别比和发病率与先前报告的统计数据一致。R Shiny网络应用程序旨在进行初步数据分析和假设生成,帮助研究人员评估流行病学研究的可行性和潜力。以头颈癌为例,我们证实了这些肿瘤与烟草和酒精消费之间的强关联,证明了EPIC在识别罕见癌症风险因素方面的适用性。然而,需要注意的是,与所有观察性研究一样,本文报告的关联并不能确立因果关系。
EPIC罕见癌症数据库的开发,以及交互式网络应用程序的开发,代表了在大规模人群队列中开展的罕见癌症研究向前迈出的重要一步。因此,在研究界提高对这一资源的认识至关重要。