Clinical performance in ERN eUROGEN for penile, testicular, adrenal and soft tissue cancers

Abstract Background European Reference Network (ERN) eUROGEN is a cross-border collaboration set up by the European Commission in 2017 aimed at tackling rare urogenital conditions, including cancers. Objective This report aims to assess ERN eUROGEN's operational activity with a focus on rare urogenital cancers. Design Setting, and Participants: Data for descriptive analyses were collected retrospectively between 2013 and 2017, and prospectively between 2018 and 2020. Outcome measurements and statistical analysis Operational indicators were set by the European Commission from 2018. Additionally, in 2019/20 centres self-assessed clinical service provision and provided clinical metrics for rare cancer specialist centres as established by experts. Results and Limitations: Results revealed that the cumulative rare urogenital cancer population increased 519.8% from 1631 in 2013 to 10,109 in 2020. This may provide opportunities for research and creation of a large cancer registry. In total, ten centres met the clinical requirements for rare cancer specialist centres providing evidence of high-volume. Differences in data collection methods between centres limit further analyses. Other rare cancer data identified 39 panel discussions, three webinars, and eight publications. Conclusions Whilst limitations to data analysis remain, ERN eUROGEN has demonstrated excellent operational performance with promising opportunities for rare cancer research.