Neurologic Clinic and Policlinic, Departments of Medicine, Biomedicine and Clinical Research, University Hospital Basel, Basel, Switzerland.
Research Center for Clinical Neuroimmunology and Neuroscience, University of Basel, Basel, Switzerland.
Nat Rev Neurol. 2021 Feb;17(2):119-125. doi: 10.1038/s41582-020-00448-7. Epub 2021 Jan 15.
Standardization is necessary to ensure the reliability of clinical data and to enable longitudinal and cross-sectional comparisons of data obtained in different centres and countries. In patients with multiple sclerosis (MS), standardized clinical data are needed for monitoring of disability and for collecting real-world evidence for use in research. This Perspective describes attempts to improve the standardization and digitization of clinical data in MS, including digital electronic health recording systems and applications that attempt to offer a comprehensive assessment of patients' neurological deficits and their effects on daily life. Despite the challenges raised by regulatory, ethical and data-privacy considerations, the standardization and digitization of clinical data in MS is expected to generate new insights into the pathophysiology of the disease and to contribute to personalized patient care.
标准化对于确保临床数据的可靠性以及实现不同中心和国家之间的数据的纵向和横向比较是必要的。在多发性硬化症(MS)患者中,需要标准化的临床数据来监测残疾,并收集用于研究的真实世界证据。本文观点描述了尝试改进 MS 中临床数据的标准化和数字化的尝试,包括数字电子健康记录系统和应用程序,旨在全面评估患者的神经功能缺损及其对日常生活的影响。尽管监管、伦理和数据隐私方面的考虑带来了挑战,但 MS 中临床数据的标准化和数字化预计将为该疾病的病理生理学提供新的见解,并有助于个性化患者护理。