The burden of rare cancers among adults in the Canton of Geneva, Switzerland, from 2011 to 2020

Article Article scientifique Article The burden of rare cancers among adults in the Canton of Geneva, Switzerland, from 2011 to 2020 eng 2025-04-07 2025 author Bot Nathalie Institute of Global Health, Faculty of Medicine, University of Geneva, Geneva, Switzerland. 82725 Institut de santé globale (COSPR) author Fournier Evelyne Geneva Cancer Registry, University of Geneva, Geneva, Switzerland. 888997 registre genevois des tumeurs (CORGT) author Amram Marie-Laure Clinique et Permanence d'Onex, Geneva, Switzerland. author Botta Laura Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS "Istituto Nazionale dei Tumori", Milan, Italy. author Bernasconi Alice Evaluative Epidemiology Unit, Department of Epidemiology and Data Science, Fondazione IRCCS "Istituto Nazionale dei Tumori", Milan, Italy. author Rapiti Aylward Elisabetta Geneva Cancer Registry, University of Geneva, Geneva, Switzerland. 134294 1557424 10.3389/fonc.2025.1557424 40260302 2234-943X PMC12009699 Introduction: Globally, cancer cases are expected to significantly increase due to population growth and aging, reaching 29.9 million by 2040 (+49.5% since 2022) and 32.6 million by 2045 (+63%), with countries like Switzerland forecasting a 36.5% increase. Rare cancers, defined as less than six cases/100,000 individuals/year, account for 15-24% for recent nationwide studies but they have fewer treatment options and lower survival rates. Using the Geneva Cancer Registry, we analyzed rare cancer incidence and survival rates in adults from the canton of Geneva, Switzerland (2011-2020), with the aim of informing future research at local and national levels. Methods: We analyzed adult patients diagnosed with invasive cancers (2011-2020) in Geneva using Geneva Cancer Registry data, which were annually updated. Rare cancers were defined according to RARECAREnet criteria (incidence less than six cases/100,000 individuals/year) and categorized into Tier 1 and Tier 2 entities based on clinical features. Crude and standardized incidence rates were calculated for both sexes using the 1976 European reference population, as well as age-specific rates for rare and common cancers. Five-year survival rates were estimated using the Kaplan-Meier method. Survival differences between rare and common cancers were assessed using log-rank tests and Cox proportional hazards models adjusted for age and gender. Statistical analyses were performed using STATA software. Results: Between 2011 and 2020, 31,233 invasive cancers were diagnosed in adults in Geneva, of which 4,296 cases (13.75%) were classified as rare based on aforementioned thresholds. While some rare Tier 1 cancers included common subtypes, most Tier 2 cancers (141 in total) were classified as rare, with significant gender disparities. Men had higher rare cancer rates such as epithelial hypopharynx, larynx, and liver tumors, while women had higher rates of squamous cell carcinoma of the anus. Rare neuroendocrine tumors, central nervous system tumors, and hematological malignancies, such as follicular B lymphoma and acute myeloid leukemia, were also prevalent among rare cancers. Rare cancers increase with age, but less so than common cancers. The 5-year survival rate for rare cancers was 58.4% when compared with 62.3% for common cancers, indicating a 15.7% higher risk of death for patients with these cancers. Discussion: These findings highlight the critical challenges and requirements of targeted research and improving care strategies for rare cancers. Efforts combatting such cancers include European Reference Networks and the Swiss Sarcoma Network, which have improved access to care via collaborative efforts. In Switzerland, Molecular Tumor Boards have leveraged genomic knowledge to refine treatments and allow patient participation in clinical trials. Early referral to such boards for aggressive or treatment-limited cancers can streamline care and facilitate patient access to specialist centers. However, Switzerland requires more comprehensive data on the distribution of rare cancers in terms of age, gender, and region to improve management strategies at national levels. Burden Cancer registry Incidence Molecular tumorboard Population-based study Rare cancer Survival Dewey 613 215 Registre genevois des tumeurs 22A12 66 Institut de santé globale 22A1 false 1311 Epidémiologie des tumeurs 1017 Frontiers in oncology 15 487663e7-f81d-4e08-bcb1-5777deb13d46 Article (Published version) Public The_burden_of_rare_cancers_among_ad.pdf 964174 application/pdf CC BY-4.0 e48a5ed09c4127774e07d67f6647f514b5587a29c5a665ea74d7c32644b89e4b 11684639-17a4-4841-a8df-62d97d5cad9e Supplemental data Public table_1-1.docx 91102 application/vnd.openxmlformats-officedocument.wordprocessingml.document 22ac5d883d32d1fbe1ea0c3515def548400e075368472188dbbfb8e944cc8e08 4d6f1d85-d534-4a63-8e7d-4f5b1ba9b9a0 Supplemental data Public data_sheet_1.xlsx 35162 application/vnd.openxmlformats-officedocument.spreadsheetml.sheet a819832c07e6c9163ffc1b693470f68f1347cc54d73318fadc4c73c97657310a openAccess Faculté de médecine / Section de médecine clinique / Département de santé et médecine communautaires / Registre genevois des tumeurs Faculté de médecine / Section de médecine clinique / Département de santé et médecine communautaires / Institut de santé globale

Title	Published in	Year	Views	Downloads

The burden of rare cancers among adults in the Canton of Geneva, Switzerland, from 2011 to 2020	Frontiers in oncology	2025	9	45
Implementing a clinical cutting-edge and decision-making activity: an ethnographic teamwork approach to a molecular tumorboard	BMC health services research	2020	212	161

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