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让社区关注多发性硬化症患者的上肢功能:ThinkHand活动案例研究

Alison Thomson¹, Rachel Horne², Christine Chapman²

¹Centre for Preventive Neurology, Wolfson Institute of Population Health, Queen Mary University of London, London, UK. a.thomson@qmul.ac.uk.

Research involvement and engagement

|June 17, 2024

概括

在多发性硬化症 (MS) 研究中,ThinkHand活动支持上肢功能,开发创新工具和以患者为中心的方法. 这种方法转移了临床试验的重点,改善了MS患者的生活质量.

科学领域:

神经学神经学
康复科学康复科学康复科学
卫生研究方法论卫生研究方法论

背景情况:

多发性硬化症 (MS) 影响全球数百万人,研究历史上忽视了上肢功能.
传统的临床试验往往排除轮椅使用者,限制他们获得潜在的治疗,影响生活质量.
"ThinkHand"运动是为了解决MS研究中对上肢功能的忽视问题而成立的.

研究的目的:

提高人们对MS患者上肢功能至关重要的意识.
开发用于测量和监测MS患者手和手臂功能变化的新方法.
倡导采用更具包容性的研究方法,考虑所有多发性硬化症患者的需求,包括轮椅使用者.

主要方法:

利用科学会议和在线调查,吸引各种利益相关者,包括多发性硬化症患者,医疗保健专业人员和研究人员.
员工共同设计和跨学科合作,创建创新的工具,如低成本的九孔测试,用于远程监控.
开发了"Under & Over"康复工具,以使晚期多发性硬化症患者能够远程参与.

主要成果:

成功地将学术和行业支持的试验 (例如,O'HAND,ChariotMS) 的重点转移到优先考虑上肢功能作为主要终点.
证明了以患者为中心的方法,跨学科合作和系统思维在应对复杂的研究挑战方面的有效性.
强调了与利益相关者共同创造在开发实用和有影响力的研究工具和战略的价值.

结论:

"ThinkHand"运动为以患者为中心的健康研究提供了一个模型,强调在各个阶段纳入患者观点.
通过实验和代驱动的创新解决方案和非传统方法,可以在疾病管理方面取得重大进展.
采用包容性和以患者为中心的方法对于彻底改变多发性硬化症研究和改善患者结果至关重要,促进更具影响力和公平的研究实践.

关键词:

临床试验中的临床试验.共同创造共同创造设计设计设计设计设计设计.多发性硬化症是多发性硬化症.患者公众参与患者公众参与患者为中心,以患者为中心.让公众参与让公众参与

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