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罕见成人实体癌患者的管理:欧洲参考网络(ERN)EURACAN的目标与评估

Management of patients with rare adult solid cancers: objectives and evaluation of European reference networks (ERN) EURACAN.

作者信息

Blay Jean-Yves, Casali Paolo, Ray-Coquard Isabelle, Seckl Michael J, Gietema Jourik, de Herder Wouter W, Caplin Martyn, Klümpen Heinz-Josef, Glehen Olivier, Wyrwicz Lucjan, Peeters Robin, Licitra Lisa, Girard Nicolas, Piperno-Neumann Sophie, Kapiteijn Ellen, Idbaih Ahmed, Franceschi Enrico, Trama Annalisa, Frezza Anna-Maria, Hohenberger Peter, Hindi Nadia, Martin-Broto Javier, Schell Johanna, Rogasik Muriel, Lejeune Stephane, Oliver Kathy, de Lorenzo Francesco, Weinman Ariane

机构信息

Department of Medical Oncology, Centre Leon Berard & Centre de Recherche en Cancérologie de Lyon (CRCL) & Université Claude Bernard Lyon 1, Lyon, France.

Department of Medical Oncology, Fondazione IRCCS Istituto Nazionale dei Tumori and University of Milan, Milan, Italy.

出版信息

Lancet Reg Health Eur. 2024 Feb 16;39:100861. doi: 10.1016/j.lanepe.2024.100861. eCollection 2024 Apr.

Abstract

About 500,000 patients with rare adult solid cancers (RASC) are diagnosed yearly in Europe. Delays and unequal quality of management impact negatively their survival. Since 2017, European reference networks (ERN) aim to improve the quality of care of patients with rare disease. The steering committee of EURACAN, including physicians, researchers and patients review here the previous actions, present objectives of the ERN EURACAN dedicated to RASC. EURACAN promoted management in reference centres, and equal implementation of excellence and innovation in Europe and developed 22 clinical practice guidelines (CPGs). Additionally, fourteen information brochures translated in 24 EU languages were developed in collaboration with patient advocacy groups (ePAGs) and seventeen training session were organized. Nevertheless, connections to national networks in the 26 participating countries (106 centres), simplification of cross-border healthcare, international multidisciplinary tumour boards, registries and monitoring of the quality of care are still required. In this Health Policy, evaluation criteria of the performances of the network and of health care providers are proposed.

摘要

欧洲每年约有50万成年罕见实体癌(RASC)患者被确诊。治疗的延误和质量不均对他们的生存产生了负面影响。自2017年以来,欧洲参考网络(ERN)旨在提高罕见病患者的护理质量。EURACAN指导委员会,包括医生、研究人员和患者,在此回顾了以往的行动,介绍了致力于RASC的ERN EURACAN的当前目标。EURACAN推动了参考中心的管理,并在欧洲平等实施卓越和创新举措,制定了22项临床实践指南(CPG)。此外,还与患者权益倡导组织(ePAG)合作编写了14份翻译成24种欧盟语言的信息手册,并组织了17次培训课程。然而,仍需要与26个参与国(106个中心)的国家网络建立联系,简化跨境医疗保健,建立国际多学科肿瘤委员会、登记处并监测护理质量。在本卫生政策中,提出了网络和医疗保健提供者绩效的评估标准。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3e4b/10879812/09bcecff6902/gr1.jpg

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