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One-year follow-up of the new European reference network for pediatric cancers (ERN PaedCan) tumor board for pediatric CNS tumors: lessons learnt and future prospects

  • Purpose: European Reference Networks (ERN) are collaborative networks connecting healthcare professionals across Europe. A virtual multidisciplinary tumor board (VMTB) for children with central nervous system (CNS) tumors was established within the ERN for pediatric oncology (ERN PaedCan) in 2022. We report the experience with this new format. Methods: A web-based questionnaire was distributed to physicians for cases presented between November 2022 and November 2023, addressing the implementation of provided recommendations, satisfaction and basic data about the local institution. Baseline information of the presented cases was taken from anonymized VMTB protocols. Results: In the first year, 19 patients from 11 institutions located in nine European countries were discussed in 21 VMTB. The German national reference center for neuroradiology demonstrated MRI findings in 19/21 (91%) conferences. 19 questionnaires were answered by physicians from all participating countries. Main reasonPurpose: European Reference Networks (ERN) are collaborative networks connecting healthcare professionals across Europe. A virtual multidisciplinary tumor board (VMTB) for children with central nervous system (CNS) tumors was established within the ERN for pediatric oncology (ERN PaedCan) in 2022. We report the experience with this new format. Methods: A web-based questionnaire was distributed to physicians for cases presented between November 2022 and November 2023, addressing the implementation of provided recommendations, satisfaction and basic data about the local institution. Baseline information of the presented cases was taken from anonymized VMTB protocols. Results: In the first year, 19 patients from 11 institutions located in nine European countries were discussed in 21 VMTB. The German national reference center for neuroradiology demonstrated MRI findings in 19/21 (91%) conferences. 19 questionnaires were answered by physicians from all participating countries. Main reason for VMTB presentation were questions about therapy (79%). Presenting institutions treated a median of 10 (5-150) neuro-oncological pediatric patients per year. All hospitals conducted own institutional tumor boards. National central review was available in 3/9 countries (33%). Recommendations were followed, at least partly, in all except one patient experiencing unexpected clinical deterioration. Recommendations were considered helpful in 90%. All participants would recommend the VMTB to colleagues. Technical issues regarding data provision were reported as the main obstacle in 56%. Conclusion: A European VMTB for pediatric patients with CNS tumors is feasible and perceived as useful by the participants. Recommendations were followed frequently. Optimization of privacy-compliant data exchange is crucial for continuance of the format.show moreshow less

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Metadaten
Author:Marthe Sönksen, Brigitte BisonORCiDGND, Lisa Bußenius, Jelena Rascon, Denise Obrecht-Sturm, Barry Pizer, Katrin Scheinemann, Martin Schalling, Ruth Ladenstein, Martin Mynarek, Stefan Rutkowski
Frontdoor URLhttps://opus.bibliothek.uni-augsburg.de/opus4/125472
ISSN:0167-594XOPAC
ISSN:1573-7373OPAC
Parent Title (English):Journal of Neuro-Oncology
Publisher:Springer Science and Business Media LLC
Place of publication:Berlin
Type:Article
Language:English
Year of first Publication:2025
Publishing Institution:Universität Augsburg
Release Date:2025/09/24
Note:
Published on behalf of the SIOPE-Brain Tumor Group. Please see publisher's website for further details.
DOI:https://doi.org/10.1007/s11060-025-05189-5
Institutes:Medizinische Fakultät
Medizinische Fakultät / Universitätsklinikum
Medizinische Fakultät / Lehrstuhl für Diagnostische und Interventionelle Neuroradiologie
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Latest Publications (not yet published in print):Aktuelle Publikationen (noch nicht gedruckt erschienen)
Licence (German):CC-BY 4.0: Creative Commons: Namensnennung (mit Print on Demand)