University MS Center (UMSC), Hasselt-Pelt, Belgium.
Biomedical Research Institute (BIOMED), Hasselt University, Diepenbeek, Belgium.
Front Immunol. 2024 Oct 22;15:1461361. doi: 10.3389/fimmu.2024.1461361. eCollection 2024.
This paper explores the significant role of real-world data (RWD) in advancing our understanding and management of Multiple Sclerosis (MS). RWD has proven invaluable in MS research and care, offering insights from larger and diverse patient populations. A key focus of the paper is the European Health Data Space (EHDS), a significant development that promises to change how healthcare data is managed across Europe. This initiative is particularly relevant to the MS community. The paper highlights various data initiatives, discussing their importance for those affected by MS. Despite the potential benefits, there are challenges and concerns, especially about ensuring that the growth of various data platforms remains beneficial for MS patients. The paper suggests practical actions for the global MS community to consider, aimed at optimizing the use of RWD. The emphasis of this discussion is on the secondary use of health data, particularly in the European context. The content is based on the author's own experiences and interpretations, offering a personal yet informed view on using RWD to improve MS research and patient care.
本文探讨了真实世界数据（RWD）在加深我们对多发性硬化症（MS）的认识和管理方面的重要作用。RWD 在 MS 研究和护理中已被证明具有不可估量的价值，为更广泛和多样化的患者群体提供了见解。本文的一个重点是欧洲健康数据空间（EHDS），这是一项重大进展，有望改变欧洲医疗数据的管理方式。这一倡议对 MS 社区尤其相关。本文强调了各种数据倡议，讨论了它们对受 MS 影响的人的重要性。尽管存在潜在的好处，但也存在挑战和担忧，特别是要确保各种数据平台的增长仍然对 MS 患者有益。本文为全球 MS 社区提出了一些实际的行动方案，旨在优化 RWD 的使用。这一讨论的重点是健康数据的二次利用，特别是在欧洲背景下。本文内容基于作者自己的经验和解释，提供了一个个人但又有见地的观点，即利用 RWD 改善 MS 研究和患者护理。
