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未来多发性硬化症的治疗:21 世纪多发性硬化症指导小组的共识声明。

Future MS care: a consensus statement of the MS in the 21st Century Steering Group.

机构信息

Department of Neurology, Sozialstiftung Bamberg Hospital, Bamberg, Germany.

出版信息

J Neurol. 2013 Feb;260(2):462-9. doi: 10.1007/s00415-012-6656-6. Epub 2012 Aug 31.

Abstract

The "MS in the 21st Century" initiative was established with the purpose of (1) defining how multiple sclerosis (MS) treatment and standards of care should look in the 21st century; (2) developing a minimum standard of care across the world; and (3) motivating the broad MS community to align standards of care and challenge the current treatment paradigm. The aim was to develop a consensus statement to reach and influence the broader MS community. An expert steering group from Europe and Canada-consisting of neurologists, patient advocates, a pharmacoepidemiologist/pharmacoeconomist, and representatives from national MS centers-participated in a series of workshop-driven meetings between February 2011 and 2012. After three phases of discussions, the steering group identified that the overall vision for future care of MS should be full access to personalized treatment, with reimbursement, to achieve freedom from disease. They constructed seven overall principles that support this vision: personalized care, patient engagement, commitment to research, regulatory body education and reimbursement issues, new endpoints in clinical trials, more therapy options, and MS centers of excellence. This consensus statement outlines the key aspects of the seven principles that need to be addressed. The "MS in the 21st Century Steering Group" hopes that this consensus statement acts as a call to action for healthcare providers and decision-makers to address simultaneously the overarching principles that will guide patient management in order to improve outcomes for people with MS.

摘要

“21 世纪的多发性硬化症”倡议的设立目的是:(1)定义 21 世纪多发性硬化症的治疗和护理标准应该是什么样的;(2)在全球范围内制定最低护理标准;(3)激励广大多发性硬化症社区遵循护理标准,并挑战当前的治疗模式。其目标是制定一项共识声明,以接触和影响更广泛的多发性硬化症社区。一个由欧洲和加拿大的神经病学家、患者权益倡导者、药物流行病学学家/药物经济学家以及国家多发性硬化症中心的代表组成的专家指导小组参与了 2011 年 2 月至 2012 年期间的一系列以研讨会为导向的会议。经过三个阶段的讨论,指导小组确定,未来多发性硬化症护理的总体愿景应该是全面获得个性化治疗,并获得报销,以实现无疾病状态。他们构建了支持这一愿景的七个总体原则:个性化护理、患者参与、对研究的承诺、监管机构教育和报销问题、临床试验的新终点、更多的治疗选择以及卓越的多发性硬化症中心。这份共识声明概述了需要解决的七个原则的关键方面。“21 世纪多发性硬化症指导小组”希望这份共识声明能够呼吁医疗保健提供者和决策者同时解决指导患者管理的总体原则,以改善多发性硬化症患者的预后。

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