德国多发性硬化症患者使用Brisa应用程序收集的关于ocrelizumab治疗的数据
Steffeni Papukchieva1, Maria Kahn1, Markus Eberl1
1Temedica GmbH, 80687 Munich, Germany.
Journal of personalized medicine
|April 27, 2024
概括
像Brisa这样的数字伴侣应用程序为多发性硬化症 (MS) 研究提供了宝贵的实时数据. 这项研究表明,Brisa的用户数据反映了MS患者的现实体验和疾病管理.
科学领域:
- 神经学 神经学
- 数字健康数字健康
- 患者报告的结果
背景情况:
- 多发性硬化症 (MS) 对全球医疗保健系统构成越来越大的挑战.
- 数字伴侣应用程序,如Brisa,正在成为管理MS患者旅程的重要工具.
- 这些应用程序有助于收集关键的实时纵向数据,以了解MS病理生理学和进展.
研究的目的:
- 分析 Brisa 数字健康应用程序的数据,以了解多发性硬化症患者的特征和症状报告.
- 为了比较不同治疗组 (中度疗效,高疗效和ocrelizumab) 的症状报告频率和严重程度.
主要方法:
- 追溯分析2021年8月至2022年9月期间注册的Brisa用户数据.
- 纳入标准需要人口统计和药物信息,以及症状或患者报告结果的跟踪 (1593名用户).
- 用户被分为中度有效治疗用户 (METU),高效治疗用户 (HETU) 和ocrelizumab用户 (OU) 进行比较分析.
主要成果:
- 最大的队列 (405名用户) 使用了ocrelizumab,大多数患者在2-5年前被诊断出来.
- 症状报告频率在ocrelizumab用户 (OU) 中最高.
- 在HETU和OU的基线得分相似,但在METU的基线得分较低. 在OU中,残疾和疼痛得分随着年龄的增长而增加,生活质量,肠道或视力没有与年龄相关的显著差异.
结论:
- 布里萨队列特征与现有的MS研究和注册表一致,提供了日常疾病管理的代表性观点.
- 布里萨数据可以弥合临床研究和真实世界患者体验之间的差距.
- 需要进一步的研究来探索"艰难而早期"的治疗方法以及基线特征如何随着时间的推移影响治疗结果.
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