{Reference Type}: Journal Article
{Title}: Clinical performance in ERN eUROGEN for penile, testicular, adrenal and soft tissue cancers.
{Author}: Ashley S;Shilhan D;Battye M;Meyer C;Mancini M;Ayres B;Muneer A;Albersen M;Feitz W;Langenhuijsen JF;Sangar V;
{Journal}: Eur J Surg Oncol
{Volume}: 0
{Issue}: 0
{Year}: Nov 2021 20
{Factor}: 4.037
{DOI}: 10.1016/j.ejso.2021.11.014
{Abstract}: <B>BACKGROUND: </B>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.<BR><B>OBJECTIVE: </B>This report aims to assess ERN eUROGEN's operational activity with a focus on rare urogenital cancers.<BR><B>METHODS: </B>Data for descriptive analyses were collected retrospectively between 2013 and 2017, and prospectively between 2018 and 2020.<BR><B>UNASSIGNED: </B>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.<BR><B>CONCLUSIONS: </B>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.<BR><B>CONCLUSIONS: </B>Whilst limitations to data analysis remain, ERN eUROGEN has demonstrated excellent operational performance with promising opportunities for rare cancer research.