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关于国家肌痛性骨髓灰质炎注册的欧洲协调:关于可收集数据的经过修改的基于德尔菲程序的专家共识
Abderhmane Slioui1, Giulia Tammam1,2, Fiammetta Vanoli3,4
1Peripheral Nervous System and Muscle Department, Reference Center for Neuromuscular Disorders, Pasteur 2 Hospital, Centre Hospitalier, Universitaire de Nice, Nice University Hospital, SNPM - Hôpital Pasteur 2 - 30 voie Romaine, 06001, Nice CEDEX, France.
Orphanet journal of rare diseases
|March 12, 2025
概括
建立欧洲Myasthenia Gravis (MG) 登记册需要统一的数据. 一个共识程序确定了必要的数据元素,以改善整个欧洲的治疗和研究.
科学领域:
- 神经学 神经学
- 自免疫性疾病 自免疫性疾病
- 医疗保健服务研究 医疗服务研究
背景情况:
- 骨髓灰质炎 (MG) 是一种罕见的自身免疫性疾病,有新兴的治疗方法.
- 由于各种各样的补偿条例,欧洲各地的治疗机会存在差异.
- 通过MG注册表收集高质量的数据对于公平的访问和研究至关重要.
研究的目的:
- 为欧洲Myasthenia Gravis登记处建立一个统一的数据集.
- 确定必要的数据元素,以便在各个国家注册表中统一收集数据.
- 促进国际合作,改善治疗机会.
主要方法:
- 使用了修改后的Delphi程序.
- 涉及文献审查,与利益相关方 (患者协会,制药公司) 进行商,以及专家的意见.
- 使用了≥80%协议的共识值.
主要成果:
- 最初确定了100个数据元素;62个达成了包含的共识.
- 商定了21个强制性数据元素,32个可选数据元素和9个知情同意项.
- 由于未达到协议门,30项项目被排除在外.
结论:
- 一种基于共识的方法成功地协调了欧洲MG注册表的基本数据元素.
- 统一的数据集将支持知识共享,欧洲合作以及监管/报销决策.
- 该倡议旨在解决欧洲各地肌痛性骨髓灰质炎患者获得治疗的差异.
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