MDS PD电子日记:一种新的以患者为中心的数字工具正在为帕金森病患者开发
Pablo Rábano-Suárez1, Mariana H G Monje2, Joaquín A Vizcarra3
1Department of Neurology, Hospital Universitario 12 de Octubre, Madrid, Spain.
Movement disorders clinical practice
|December 13, 2025
概括
开发了一个新的数字工具,MDS PD e-Diary,用于跟踪帕金森病 (PD) 的进展及其对帕金森病 (PwP) 患者的日常影响. 该工具旨在改善患者护理和加强临床试验.
科学领域:
- 神经学 神经学
- 数字健康数字健康
- 患者报告的结果
背景情况:
- 评估帕金森病 (PD) 对帕金森病 (PwP) 患者日常生活的影响需要改进评估方法.
- 目前的方法可能无法完全捕捉患有PD的生活多方面的经验.
研究的目的:
- 概念化和设计MDS PD电子日记,这是一个由国际帕金森和运动障碍学会委托的新型数字工具.
- 创建一个以患者为中心的工具来跟踪帕金森病的进展.
主要方法:
- 采用了经过修改的Delphi方法论,以在不同利益相关者之间达成共识.
- 关键的利益相关者包括普华永道,护理合作伙伴,PD专家,行业代表和监管专家.
- 数据收集包括在线问卷,焦点小组和社区范围的调查.
主要成果:
- 在多平台患者报告的结果工具上达成共识,用于跟踪PD进展.
- MDS PD e-Diary具有一个症状和活动项目银行,具有两个用户模式:个人 (自我跟踪和数据共享) 和研究 (临床试验增强).
- 该工具旨在提供可定制的自我跟踪和专业数据共享,以改善标准护理.
结论:
- MDS PD电子日记旨在记录PD的进展及其对普华永道员工生活的影响.
- 这个数字工具有可能改变帕金森病的研究和临床实践.
- 目前正在进行MDS PD电子日记的进一步开发和验证.
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