Development and application of a clinical core data set for deep brain stimulation in Parkinson's disease, dystonia or tremor: from data collection to data exchange and data sharing.

Q2 Medicine
Anna-Lena Hofmann, Jonas Widmann, Lilly Brandstetter, Udo Selig, Fabian Haug, Julian Haug, Rüdiger Pryss, Jasper Mecklenburg, Andrea Kreichgauer, Philipp Capetian, Christian J Hartmann, Christian Niklas, Petra Ritter, Patricia Krause, Alfons Schnitzler, Jens Volkmann, Andrea A Kühn, Peter Heuschmann, Kirsten Haas
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引用次数: 0

Abstract

Background: Comprehensive clinical data regarding factors influencing the individual disease course of patients with movement disorders treated with deep brain stimulation might help to better understand disease progression and to develop individualized treatment approaches.

Methods: The clinical core data set was developed by a multidisciplinary working group within the German transregional collaborative research network ReTune. The development followed standardized methodology comprising review of available evidence, a consensus process and performance of the first phase of the study. To ensure high data quality, measures for standardized training, monitoring as well as plausibility and data quality tests were implemented.

Results: The clinical core data set comprises information about medical history, clinical symptoms, information about deep brain stimulation surgery, complications and outcome for the main neurological movement disorders Parkinson's disease, tremor, and dystonia. Its applicability as well as data exchange and quality control was tested within the first phase of the study in 51 patients from Würzburg.

Conclusions: Within the ReTune project, a standardised clinical core data set for Parkinson's disease, dystonia and tremor was developed. The collection as well as concepts for the implementation of monitoring and data exchange were elaborated and successfully tested. Trial registration number ClinicalTrials.gov (DRKS-ID: DRKS00031878).

帕金森病、肌张力障碍或震颤深部脑刺激临床核心数据集的开发和应用:从数据收集到数据交换和数据共享。
背景:对脑深部电刺激治疗的运动障碍患者个体病程影响因素的综合临床数据可能有助于更好地了解疾病进展并制定个体化治疗方法。方法:临床核心数据集由德国跨区域合作研究网络ReTune内的多学科工作组开发。该研究采用了标准化方法,包括对现有证据的审查、达成共识的过程和第一阶段研究的执行情况。为确保高数据质量,实施了标准化培训、监测以及可行性和数据质量测试措施。结果:临床核心数据集包括病史、临床症状、深部脑刺激手术信息、主要神经运动障碍帕金森病、震颤和肌张力障碍的并发症和结局。在第一阶段的研究中,来自w rzburg的51名患者对其适用性、数据交换和质量控制进行了测试。结论:在ReTune项目中,开发了帕金森病、肌张力障碍和震颤的标准化临床核心数据集。详细阐述了用于实施监测和数据交换的收集和概念,并成功地进行了测试。试验注册号ClinicalTrials.gov (DRKS-ID: DRKS00031878)。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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CiteScore
7.40
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审稿时长
14 weeks
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