欧洲参考网络eUROGEN,接受儿科泌尿外科杂志的采访。

IF 1.9 3区 医学 Q2 PEDIATRICS
Wouter Feitz, Michelle Battye, Hsi-Yang Wu, Magdalena Fossum
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引用次数: 0

摘要

欧洲参考网络(ERNs)倡议由欧洲委员会发起。该倡议于2017年启动,以响应2011年欧盟跨境医疗保健指令(指令2011/24/EU),该指令强调有必要改善整个欧盟罕见疾病和复杂病症患者的医疗保健。目前,有24个急诊室可用于治疗罕见疾病。欧洲罕见泌尿-直肠-生殖器疾病和复杂病症(ERN eUROGEN)是改善欧洲罕见和复杂泌尿-直肠-生殖器疾病管理的基石。它的合作模式确保了所有欧盟患者都能获得专业知识和创新,无论他们身处何地,同时促进了研究、教育和医疗保健服务方面的重大进步。多国专家中心包括20个国家和52个医疗保健提供者(在ERN社区中,医疗保健提供者是ERN的正式成员,通常是具有学术和研究能力的大型医院或机构)。在这篇综述文章中,我们采访了来自ERN eUROGEN的两位主要专家,以增加对ERN倡议及其演变的一般知识。我们还旨在从临床角度展示参与的好处,以及罕见病患者如何从与其他中心和不同国家的专家的虚拟咨询中受益。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The European Reference Network eUROGEN, an interview by the Journal of Pediatric Urology.

The European Reference Networks (ERNs) initiative was started by the European Commission. The initiative was launched in 2017 in response to the 2011 EU Directive on Cross-Border Healthcare (Directive 2011/24/EU), which emphasized the need to improve healthcare for patients with rare diseases and complex conditions across the European Union. Currently, 24 ERNs are available for rare diseases. The ERN for rare uro-recto-genital diseases and complex conditions (ERN eUROGEN) is a cornerstone in improving the management of rare and complex uro-recto-genital conditions in Europe. Its collaborative model ensures that expertise and innovation are accessible to all EU patients, regardless of location, while fostering significant advancements in research, education, and healthcare delivery. The multinational inclusion of Centers of expertise includes 20 countries and 52 healthcare providers (in the ERN community, a healthcare provider is an official member of an ERN and is usually a large hospital or institution with academic and research capabilities). In this review article, we interviewed two leading experts from ERN eUROGEN to increase general knowledge of the ERN initiative and its evolution. We also aimed to show the benefits of participation from a clinical standpoint and how patients with rare diseases can benefit from virtual consultations with experts at other centers and in different countries.

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来源期刊
Journal of Pediatric Urology
Journal of Pediatric Urology PEDIATRICS-UROLOGY & NEPHROLOGY
CiteScore
3.70
自引率
15.00%
发文量
330
审稿时长
4-8 weeks
期刊介绍: The Journal of Pediatric Urology publishes submitted research and clinical articles relating to Pediatric Urology which have been accepted after adequate peer review. It publishes regular articles that have been submitted after invitation, that cover the curriculum of Pediatric Urology, and enable trainee surgeons to attain theoretical competence of the sub-specialty. It publishes regular reviews of pediatric urological articles appearing in other journals. It publishes invited review articles by recognised experts on modern or controversial aspects of the sub-specialty. It enables any affiliated society to advertise society events or information in the journal without charge and will publish abstracts of papers to be read at society meetings.
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