脑水症协会患者驱动互动参与注册表 (HAPPIER):设计和初始基线报告
Noriana E Jakopin1, Samantha N Lanjewar1, Amanda Garzon1
1Research Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.
Clinical epidemiology
|July 1, 2025
概括
脑水症协会的患者驱动互动参与登记 (HAPPIER) 收集患者的经验,以改善对脑水症的护理,这是一个治疗方法有限的疾病. 这个数据库为患者报告的结果和并发症提供了有价值的见解.
科学领域:
- 神经学 神经学
- 患者报告的结果
- 医疗信息学 医疗信息学
背景情况:
- 水脑是一种由脑脊液积累而表现出的神经疾病,缺乏治愈和有效的治疗方法.
- 关于水头管理中的患者观点,存在一个重要的研究差距.
- 以患者为中心的护理需要了解水脑患者的经历.
研究的目的:
- 为了引入水脑病协会的患者驱动互动参与登记 (HAPPIER) 数据库.
- 为了捕捉和分析受水头影响的个人的生活经历.
- 为研究人员提供一个平台,访问患者数据和分发调查,旨在改善以患者为中心的护理.
主要方法:
- 该HAPPIER注册表是由Hydrocephalus协会在一个指导委员会,现有注册表和数据专家的指导下开发的.
- 参与者招聘利用社交媒体,传统媒体,医疗推和活动广告.
- 调查的开发是根据现有的评估和患者登记册的最佳实践进行的.
主要成果:
- 该注册表包括691名参与者,其中451人直接响应.
- 大多数参与者是女性 (55.0%),白人 (86.0%),来自美国.
- 先天性水头是最常见的病因 (43.8%),而分流作为主要治疗方法 (71.2%). 头痛是最常见的症状 (60.3%).
结论:
- HAPPIER是一个新的数据库,解决了非临床头症结局中的关键差距.
- 该注册表通过纵向数据收集和调查将患者的基本观点纳入注册表.
- 在HAPPIER中的数据可供研究人员用于旨在改善头的护理和理解的研究.
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