发展一个多学科,国际,儿科注册的指导:一个系统的审查
S Ombashi1, P A J van der Goes2, S L Versnel1
1Department of Plastic, Reconstructive and Hand Surgery, Erasmus Medical Center, Rotterdam, The Netherlands.
Orphanet journal of rare diseases
|September 22, 2023
概括
这次审查确定了建立欧洲裂唇和 palatal 注册的关键主题. 这些发现指导着开发一个多学科的儿科注册表,以改善面护理.
科学领域:
- 医学研究 医学研究
- 公共卫生 公共卫生
- 医疗信息学 医疗信息学
背景情况:
- 面异常和耳鼻喉疾病的欧洲参考网络 (ERN-CRANIO) 旨在在欧洲范围内加强面护理.
- 在ERN-CRANIO内部的裂唇和 palatal (CL/P) 工作流确定了欧洲注册表的必要性,以标准化结果测量和治疗终点.
- 本次审查通过检查先前的注册计划,为概念化这样的注册提供了基础.
结论:
- 这次审查成功确定了创建泛欧洲裂护理的国际,多学科儿科注册表的基本主题.
- 从此次审查中获得的指导适用于ERN-CRANIO的目标,并可以有利于其他注册表开发计划.
- 这些发现支持建立一个全面的注册表,以改善唇裂患者的治疗结果.
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