新的欧洲儿童癌症参考网络(ERN PaedCan)肿瘤委员会对儿童中枢神经系统肿瘤的一年随访:经验教训和未来展望

IF 3.1 2区 医学 Q2 CLINICAL NEUROLOGY
Journal of Neuro-Oncology Pub Date : 2025-12-01 Epub Date: 2025-09-16 DOI:10.1007/s11060-025-05189-5
Marthe Sönksen, Brigitte Bison, Lisa Bußenius, Jelena Rascon, Denise Obrecht-Sturm, Barry Pizer, Katrin Scheinemann, Martin Schalling, Ruth Ladenstein, Martin Mynarek, Stefan Rutkowski
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引用次数: 0

摘要

目的:欧洲参考网络(ERN)是连接整个欧洲医疗保健专业人员的协作网络。2022年,儿童中枢神经系统(CNS)肿瘤的虚拟多学科肿瘤委员会(VMTB)在儿科肿瘤学ERN (ERN PaedCan)内建立。我们报告使用这种新格式的经验。方法:对2022年11月至2023年11月期间就诊的医生进行网络问卷调查,调查所提供建议的实施情况、满意度和当地机构的基本数据。所述病例的基线信息取自匿名VMTB协议。结果:第一年,来自9个欧洲国家的11家机构的19名患者在21个VMTB中进行了讨论。德国国家神经放射学参考中心在19/21(91%)会议上展示了MRI结果。来自所有参与国的医生回答了19份问卷。出现VMTB的主要原因是治疗方面的问题(79%)。目前各机构每年平均治疗10例(5-150例)小儿神经肿瘤患者。所有医院都有自己的机构肿瘤委员会。3/9的国家(33%)进行了国家中心审查。除一名出现意外临床恶化的患者外,所有患者都至少部分地遵循了建议。90%的人认为推荐是有用的。所有参与者将向同事推荐VMTB。56%的人认为数据提供方面的技术问题是主要障碍。结论:欧洲VMTB治疗小儿中枢神经系统肿瘤是可行的,并且被参与者认为是有用的。建议经常得到执行。符合隐私的数据交换的优化对于格式的延续至关重要。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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.

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.

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 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.

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来源期刊
Journal of Neuro-Oncology
Journal of Neuro-Oncology 医学-临床神经学
CiteScore
6.60
自引率
7.70%
发文量
277
审稿时长
3.3 months
期刊介绍: The Journal of Neuro-Oncology is a multi-disciplinary journal encompassing basic, applied, and clinical investigations in all research areas as they relate to cancer and the central nervous system. It provides a single forum for communication among neurologists, neurosurgeons, radiotherapists, medical oncologists, neuropathologists, neurodiagnosticians, and laboratory-based oncologists conducting relevant research. The Journal of Neuro-Oncology does not seek to isolate the field, but rather to focus the efforts of many disciplines in one publication through a format which pulls together these diverse interests. More than any other field of oncology, cancer of the central nervous system requires multi-disciplinary approaches. To alleviate having to scan dozens of journals of cell biology, pathology, laboratory and clinical endeavours, JNO is a periodical in which current, high-quality, relevant research in all aspects of neuro-oncology may be found.
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