Clinical performance in ERN eUROGEN for penile, testicular, adrenal and soft tissue cancers.
Adrenal tumours
ERN eUROGEN
European reference network
Penile cancer
Soft tissue cancer
Testicular cancer
Journal
European journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology
ISSN: 1532-2157
Titre abrégé: Eur J Surg Oncol
Pays: England
ID NLM: 8504356
Informations de publication
Date de publication:
Mar 2022
Mar 2022
Historique:
received:
06
10
2021
accepted:
14
11
2021
pubmed:
12
12
2021
medline:
6
5
2022
entrez:
11
12
2021
Statut:
ppublish
Résumé
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. This report aims to assess ERN eUROGEN's operational activity with a focus on rare urogenital cancers. Data for descriptive analyses were collected retrospectively between 2013 and 2017, and prospectively between 2018 and 2020. 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 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. Whilst limitations to data analysis remain, ERN eUROGEN has demonstrated excellent operational performance with promising opportunities for rare cancer research.
Sections du résumé
BACKGROUND
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
OBJECTIVE
This report aims to assess ERN eUROGEN's operational activity with a focus on rare urogenital cancers.
DESIGN, SETTING AND PARTICIPANTS
METHODS
Data for descriptive analyses were collected retrospectively between 2013 and 2017, and prospectively between 2018 and 2020.
OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS
METHODS
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
CONCLUSIONS
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
CONCLUSIONS
Whilst limitations to data analysis remain, ERN eUROGEN has demonstrated excellent operational performance with promising opportunities for rare cancer research.
Identifiants
pubmed: 34893364
pii: S0748-7983(21)00819-2
doi: 10.1016/j.ejso.2021.11.014
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
680-686Informations de copyright
Copyright © 2021 Elsevier Ltd, BASO ~ The Association for Cancer Surgery, and the European Society of Surgical Oncology. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Darren E. Shilhan, Michelle Battye, Hans Langenhuijsen and Wout F.J. Feitz report to be under employment of the European Union Connection Europe Facility grant permitted for the ERN eUROGEN coordination team and ERN eUROGEN Direct Grant.