Title |
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 |
Authors |
Sönksen, Marthe ; Bison, Brigitte ; Bußenius, Lisa ; Rascon, Jelena ; Obrecht-Sturm, Denise ; Pizer, Barry ; Scheinemann, Katrin ; Schalling, Martin ; Ladenstein, Ruth ; Mynarek, Martin ; Rutkowski, Stefan |
DOI |
10.1007/s11060-025-05189-5 |
Full Text |
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Is Part of |
Journal of neuro-oncology.. New York : Springer Nature. 2025, Early Access, p. [1-9].. ISSN 0167-594X. eISSN 1573-7373 |
Keywords [eng] |
childhood cancer ; European Reference Networks (ERN) ; European Reference Network for pediatric cancers (ERN PaedCan) ; pediatric brain tumors ; multidisciplinary tumor boards |
Abstract [eng] |
Abstract 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 Novem- ber 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 ques- tionnaires were answered by physicians from all participating countries. Main reason for VMTB presentation were ques- tions 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. |
Published |
New York : Springer Nature |
Type |
Journal article |
Language |
English |
Publication date |
2025 |
CC license |
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