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 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.

Keywords: Adrenal tumours; ERN eUROGEN; European reference network; Penile cancer; Soft tissue cancer; Testicular cancer.