开发和应用临床核心数据集用于帕金森病, dystonia 或震的深度大脑刺激:从数据收集到数据交换和数据共享
Anna-Lena Hofmann1,2, Jonas Widmann3, Lilly Brandstetter3
1Institute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU), Haus D7, Josef-Schneider-Straße 2, 97080, Würzburg, Germany. Hofmann_A9@ukw.de.
Neurological research and practice
|January 29, 2025
概括
开发了一套标准化的临床数据集,用于用深度大脑刺激治疗帕金森病, dystonia 和震. 这一数据集有助于理解疾病进展,并为运动障碍提供个性化的治疗方法.
科学领域:
- 神经学 神经学
- 神经外科 神经外科
- 临床数据管理 临床数据管理
背景情况:
- 了解运动障碍中的个体疾病进展对于个性化深度脑刺激 (DBS) 治疗至关重要.
- 需要全面的临床数据来分析影响DBS治疗患者疾病进展的因素.
研究的目的:
- 为使用DBS治疗的运动障碍开发标准化临床核心数据集.
- 在研究网络中建立数据收集,监测和交换的方法.
主要方法:
- 一个多学科的工作组使用证据审查和共识开发了数据集.
- 实施了标准化的培训,监测和数据质量测试.
- 该数据集的适用性在51名患者的试点研究中进行了测试.
主要成果:
- 为帕金森病,和 dystonia 创建了一个临床核心数据集.
- 数据集包括病史,症状,DBS手术细节,并发症和结果.
- 成功测试了数据交换和质量控制概念.
结论:
- 在ReTune项目中成功开发了一套针对帕金森病, dystonia 和 tremor 的标准化临床核心数据集.
- 制定和验证了数据收集,监测和交换的方法.
- 这一数据集有助于更好地理解和个性化治疗运动障碍.
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