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

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 1,631 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.