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EXABO的实施——欧洲罕见呼吸系统疾病参考网络专家咨询委员会

Implementation of EXABO - An Expert Advisory Board for the European Reference Network for Rare Respiratory Diseases.

作者信息

Walther Désirée, Steinmann Olivia, Wagner Thomas O F, Storf Holger

机构信息

Medical Informatics Group (MIG), Frankfurt, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany.

Frankfurt Reference Center for Rare Diseases (FRZSE), University Hospital Frankfurt, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany.

出版信息

Stud Health Technol Inform. 2020 Jun 16;270:986-990. doi: 10.3233/SHTI200309.

Abstract

Rare conditions can make it difficult for physicians and healthcare providers to find the right answers and treatment for patients suffering rare diseases. The number of experts specializing in rare diseases in Europe is low. In order to ensure qualified diagnosis, treatment and care for these patients, the European Commission has founded the European Reference Networks (ERNs), which are virtual networks that include healthcare providers across Europe aiming to provide better care for patients across Europe. The European Reference Network LUNG (ERN-LUNG) has been established for patients with rare respiratory diseases seeking care and advice on all aspects of rare respiratory diseases. In the context of ERN-LUNG, the Expert Advisory Board (EXABO) was implemented. EXABO is a pan-European internet platform based on a question-answering system to support answering questions regarding all areas of rare respiratory diseases. This paper gives a brief overview of the first steps taken regarding the implementation of the EXABO platform, the challenges faced and the lessons that have been learned.

摘要

罕见病会使医生和医疗服务提供者难以找到针对罕见病患者的正确答案和治疗方法。欧洲专门从事罕见病研究的专家数量较少。为了确保为这些患者提供合格的诊断、治疗和护理,欧盟委员会成立了欧洲参考网络(ERNs),这是一个虚拟网络,涵盖了欧洲各地的医疗服务提供者,旨在为欧洲各地的患者提供更好的护理。欧洲参考网络肺部疾病(ERN-LUNG)是为寻求罕见呼吸道疾病各方面护理和建议的患者而设立的。在ERN-LUNG的背景下,实施了专家咨询委员会(EXABO)。EXABO是一个基于问答系统的泛欧互联网平台,以支持回答有关罕见呼吸道疾病所有领域的问题。本文简要概述了EXABO平台实施的初步步骤、面临的挑战以及所吸取的经验教训。

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