• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

欧洲罕见病参考网络:概念框架是什么?

European Reference networks for rare diseases: what is the conceptual framework?

机构信息

Bundesministerium für Gesundheit, Rochusstr. 1, 53123, Bonn, Germany.

出版信息

Orphanet J Rare Dis. 2017 Aug 7;12(1):137. doi: 10.1186/s13023-017-0676-3.

DOI:10.1186/s13023-017-0676-3
PMID:28784158
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5547471/
Abstract

With the Cross-Border Healthcare Directive (2011/24/EU) a mandatory framework was established to foster cooperation on a voluntary basis, within European Reference Networks (ERNs). These networks are composed of centres and healthcare providers. The exchange of knowledge is a central issue in this context. A detailed literature survey was carried out to determine the most important factors affecting information and knowledge exchange, as well as learning, in networks and how this can be supported. New communication technologies are identified as key tools for the European Reference Networks (ERN). This study recommends the elaboration of a systematic knowledge use and knowledge generation plan. The data of this study suggests that the future ERNs will mediate the adoption of the digitised and networked information society in medical practice.

摘要

《跨境医疗指令(2011/24/EU)》建立了一个强制性框架,以促进在欧洲参考网络(ERNs)基础上自愿开展合作。这些网络由中心和医疗服务提供者组成。知识交流是这方面的核心问题。为了确定影响网络中的信息和知识交流以及学习的最重要因素,以及如何支持这些因素,进行了详细的文献调查。新的通信技术被确定为欧洲参考网络(ERN)的关键工具。本研究建议制定系统的知识使用和知识生成计划。本研究的数据表明,未来的 ERN 将在医疗实践中推动数字化和网络化信息社会的采用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b755/5547471/11256dfa4907/13023_2017_676_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b755/5547471/11256dfa4907/13023_2017_676_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b755/5547471/11256dfa4907/13023_2017_676_Fig1_HTML.jpg

相似文献

1
European Reference networks for rare diseases: what is the conceptual framework?欧洲罕见病参考网络:概念框架是什么?
Orphanet J Rare Dis. 2017 Aug 7;12(1):137. doi: 10.1186/s13023-017-0676-3.
2
[European Reference Networks : Consequences for healthcare in Germany].[欧洲参考网络:对德国医疗保健的影响]
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 May;60(5):537-541. doi: 10.1007/s00103-017-2533-x.
3
[Healthcare networks for people with rare diseases: integrating data and expertise].[面向罕见病患者的医疗保健网络:整合数据与专业知识]
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2022 Nov;65(11):1164-1169. doi: 10.1007/s00103-022-03592-1. Epub 2022 Sep 27.
4
European Reference Networks and Guideline Development and Use: Challenges and Opportunities.欧洲参考网络与指南的制定及应用:挑战与机遇
Public Health Genomics. 2015;18(5):318-20. doi: 10.1159/000435852. Epub 2015 Jul 23.
5
Interoperability Architecture for a Paediatric Oncology European Reference Network.欧洲儿科肿瘤学参考网络的互操作性架构
Stud Health Technol Inform. 2016;223:39-45.
6
RarERN Path: a methodology towards the optimisation of patients' care pathways in rare and complex diseases developed within the European Reference Networks.罕见病和复杂疾病欧洲参考网络优化患者护理路径的方法:RarERN路径
Orphanet J Rare Dis. 2020 Dec 14;15(1):347. doi: 10.1186/s13023-020-01631-1.
7
The European Union Policy in the Field of Rare Diseases.欧盟罕见病领域政策。
Adv Exp Med Biol. 2017;1031:561-587. doi: 10.1007/978-3-319-67144-4_30.
8
[European Reference Networks for rare diseases].[欧洲罕见病参考网络]
Ned Tijdschr Geneeskd. 2018;162:D2376.
9
Creating a European Union framework for actions in the field of rare diseases.创建一个欧盟在罕见病领域的行动框架。
Adv Exp Med Biol. 2010;686:457-73. doi: 10.1007/978-90-481-9485-8_25.
10
The European union policy in the field of rare diseases.欧盟在罕见病领域的政策。
Public Health Genomics. 2013;16(6):268-77. doi: 10.1159/000355930. Epub 2014 Feb 3.

引用本文的文献

1
Enhancing Rare Disease Awareness and Education Among Medical Professionals and Students in Türkiye.提高土耳其医学专业人员和学生对罕见病的认识与教育水平。
J Eval Clin Pract. 2025 Aug;31(5):e70242. doi: 10.1111/jep.70242.
2
Developing a standard dataset in the European registries for rare endocrine and bone conditions-a Melorheostosis dataset.在欧洲罕见内分泌和骨骼疾病登记处开发标准数据集——骨肥大症数据集。
Orphanet J Rare Dis. 2025 Jul 1;20(1):331. doi: 10.1186/s13023-025-03862-6.
3
Mapping the rare disease paediatric clinical trial availabilities in Europe.

本文引用的文献

1
Health activism and the logic of connective action. A case study of rare disease patient organisations.健康行动主义与连接行动的逻辑。罕见病患者组织的案例研究。
Inf Commun Soc. 2016 Nov 1;19(11):1653-1671. doi: 10.1080/1369118X.2016.1154587. Epub 2016 Mar 21.
2
Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks.关于医疗保健专业人员、患者组织和行业在欧洲参考网络中作用的立场声明。
Orphanet J Rare Dis. 2016 Jan 25;11:7. doi: 10.1186/s13023-016-0383-5.
3
Collaborative Crowdsourcing for the Diagnosis of Rare Genetic Syndromes: The DYSCERNE Experience.
绘制欧洲罕见病儿科临床试验的可及情况。
Front Pediatr. 2025 May 19;13:1523847. doi: 10.3389/fped.2025.1523847. eCollection 2025.
4
The impact of rare diseases on the quality of life in paediatric patients: current status.罕见病对儿科患者生活质量的影响:现状
Front Public Health. 2025 Mar 24;13:1531583. doi: 10.3389/fpubh.2025.1531583. eCollection 2025.
5
Pregnancy-related issues in rare and low-prevalence diseases: results of ERN transversal working group on pregnancy and family planning survey.罕见病和低流行疾病中的妊娠相关问题:ERN妊娠与计划生育调查横向工作组的结果
Orphanet J Rare Dis. 2025 Mar 10;20(1):112. doi: 10.1186/s13023-024-03435-z.
6
Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology.重症肌无力的流行病学、管理及患者需求:基于德尔菲法的意大利多利益相关方共识
BMJ Open. 2024 Dec 22;14(12):e086225. doi: 10.1136/bmjopen-2024-086225.
7
Development of the CDISC Pediatrics User Guide: a CDISC and conect4children collaboration.CDISC儿科用户指南的制定:CDISC与conect4children的合作项目
Front Med (Lausanne). 2024 Jun 17;11:1370916. doi: 10.3389/fmed.2024.1370916. eCollection 2024.
8
Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.罕见病中“隐形”的患者:父母对儿童罕见病的医疗保健和社会服务的体验。一项混合方法研究。
Sci Rep. 2024 Jun 18;14(1):14016. doi: 10.1038/s41598-024-63962-4.
9
Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases.欧洲罕见骨骼和矿物质疾病数据收集:登记处和数据库的现状。
Eur J Med Genet. 2023 Dec;66(12):104868. doi: 10.1016/j.ejmg.2023.104868. Epub 2023 Oct 30.
10
Multidisciplinary teams in the clinical care of fibrotic interstitial lung disease: current perspectives.纤维化间质性肺疾病临床护理中的多学科团队:当前观点
Eur Respir Rev. 2022 Sep 7;31(165). doi: 10.1183/16000617.0003-2022. Print 2022 Sep 30.
用于罕见遗传综合征诊断的协作众包:DYSCERNE项目经验
Public Health Genomics. 2016;19(1):19-24. doi: 10.1159/000440710. Epub 2015 Oct 9.
4
Crowdsourcing--harnessing the masses to advance health and medicine, a systematic review.众包——利用大众力量推动健康与医学发展,一项系统综述
J Gen Intern Med. 2014 Jan;29(1):187-203. doi: 10.1007/s11606-013-2536-8. Epub 2013 Jul 11.
5
Research performance of centers of expertise for rare diseases--the influence of network integration, internal resource access and operational experience.专家型罕见病中心的研究绩效——网络整合、内部资源获取和运营经验的影响。
Health Policy. 2012 May;105(2-3):138-45. doi: 10.1016/j.healthpol.2012.02.008. Epub 2012 Mar 7.
6
Network resilience in the face of health system reform.面对医疗体系改革的网络弹性
Soc Sci Med. 2010 Mar;70(5):779-86. doi: 10.1016/j.socscimed.2009.11.011. Epub 2010 Jan 6.
7
Strategies for multi-hospital networks: a framework.多医院网络策略:一个框架
Health Serv Manage Res. 2005 May;18(2):86-99. doi: 10.1258/0951484053723135.
8
Hierarchies and cliques in the social networks of health care professionals: implications for the design of dissemination strategies.医疗保健专业人员社交网络中的层级与小团体:对传播策略设计的启示
Soc Sci Med. 1999 Mar;48(5):633-46. doi: 10.1016/s0277-9536(98)00361-x.