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从帕金森病研究患者咨询委员会与学术中心的模型中吸取的经验教训
概括
帕金森病 (PD) 研究中的患者咨询委员会 (PAB) 提高了患者参与度和比较有效性研究 (CER). 这个试点项目成功培训了参与者,并增加了参与CER的参与度.
科学领域:
- 神经学 神经学
- 临床研究 临床研究
- 患者参与 患者参与
背景情况:
- 对帕金森病 (PD) 的比较有效性研究 (CER) 是有限的.
- 患者咨询委员会 (PAB) 提供了一种策略,使PD患者参与研究.
- 解决CER的差距需要创新的患者参与方法.
研究的目的:
- 概述一个项目模型,用于在帕金森病研究中实施PAB.
- 在帕金森基金会的五个卓越中心中分享从试点PAB倡议中学到的经验教训.
- 评估CER中患者参与策略的有效性.
主要方法:
- 开发并利用了一个专注于患者参与,PAB和CER的虚拟培训计划和工具包.
- 在五个卓越中心内实施了PAB试点项目.
- 通过调查评估参与者的满意度以及培训和试点模型的影响.
主要成果:
- PAB参与者 (n=28) 报告了全面的培训,他们的反影响了CER问题的发展.
- 试点模型在培训工作人员,患有PD的个人和护理合作伙伴参与患者参与方面取得了成功.
- 参与者的反表明,它对PAB制定CER问题的目标产生了积极影响.
结论:
- 建立的PAB模型成功地提高了对比疗效研究的参与率.
- 该项目有效地培训了各种利益相关者,包括员工,患有PD的人和护理合作伙伴,在患者参与技巧中.
- 实施PAB是一种可行的策略,可以加强患者参与PD研究.
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