立陶宛多发性硬化病登记:当前的框架和质量挑战
Julija Isačenko1, Dalia Musneckienė2, Rasa Kizlaitienė3
1Department of Neurology, Lithuanian University of Health Sciences Kaunas Clinics, Kaunas, Lithuania.
Frontiers in neurology
|March 11, 2026
概括
立陶宛多发性硬化症 (MS) 登记处自2013年以来一直跟踪患者数据. 虽然覆盖了超过70%的疾病修饰疗法患者,但在招生和数据质量方面存在挑战.
科学领域:
- 神经学 神经学
- 公共卫生 公共卫生
- 数据科学数据科学数据科学
背景情况:
- 立陶宛多发性硬化症 (MS) 注册表于2013年由立陶宛神经病学家协会建立.
- 它作为在立陶宛被诊断患有多发性硬化症的成年人监测系统.
- 从提供MS治疗的所有国家中心收集数据.
研究的目的:
- 介绍立陶宛MS注册表的当前结构.
- 详细说明其数据收集方法,覆盖范围和限制.
- 评估注册表对临床实践和研究的有用性.
主要方法:
- 从2013年2月1日到2024年1月1日提取的数据.
- 纳入标准:成年多发性硬化症患者在立陶宛接受照顾,经过知情同意.
- 数据点包括人口统计,诊断,临床状态 (EDSS),治疗和复发.
主要成果:
- 该注册表包含2923名患者,其中1651名 (47.3%) 在积极跟踪中.
- 它涵盖69.5%-74.6%的接受疾病修饰疗法的患者.
- 数据包括人口统计,诊断结果,EDSS,治疗和复发信息.
结论:
- 该注册表已经运行了十多年,收集了宝贵的MS患者数据.
- 在患者招募和确保高质量的数据收集方面仍然存在挑战.
- 加强验证流程对于提高注册表可靠性和实用性至关重要.
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