开发国家门尼尔病名册:可行性研究
John Phillips1, Louisa Murdin2, Peter Rea3
1Department of Otolaryngology, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, United Kingdom.
The journal of international advanced otology
|August 20, 2024
概括
这项研究成功试行了以患者为中心的Ménière疾病注册表,招募了411名参与者. 该注册表有效地收集了患者数据,为未来对这种致残疾病的研究铺平了道路.
科学领域:
- 神经学 神经学
- 耳鼻喉科 耳鼻喉科 耳鼻喉科
- 临床研究 临床研究
背景情况:
- 梅尼埃尔病是一种衰弱的内耳疾病,其特点是头和听力损失,其病因和进展尚未完全理解.
- 患者登记册是研究疾病表型和自然史的宝贵工具.
研究的目的:
- 评估在英国建立以患者为中心的全国Ménière疾病登记册的可行性.
- 试点招聘和数据收集方法用于Ménière疾病登记册.
主要方法:
- 一项观察性可行性研究,涉及411名成年参与者,在英国的4家医院和4家诊所诊断出患有Ménière病.
- 数据收集包括患者报告的结果,问卷,听力测量,放射学和专家平衡测试,进入一个定制的数据库.
- 参与者通过在线 (73%) 和纸质 (27%) 方法进行招聘.
主要成果:
- 成功招募了411名参与者,其中大多数人选择在线参与.
- 在线和纸质数据收集方法之间观察到可比的数据完整性.
- 大约20%的参与者表现出双边Ménière病的听觉证据.
结论:
- 可行性研究成功展示了有效的方法来招募大量的Ménière病患者.
- 已建立的数据收集平台是强大的,能够进行广泛的数据捕获.
- 该试点作为扩大注册表以全面研究Ménière病的基础.
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