罕见病病例诊疗信息登记管理体系构建

Construction of the registration management system for medical information of rare disease cases

罕见病病例诊疗信息登记可以为制定人群干预策略、完善诊疗服务体系、提高患者医疗保障水平、提高药物可及性提供科学依据。作者结合医院工作实践,从制定政策制度、建立组织人员架构、组织宣传罕见病诊疗政策、随访和维护罕见病病例诊疗信息登记数据等方面,介绍罕见病病例诊疗信息登记立体管理体系的构建实践,以期为罕见病患者登记制度实施过程中的管理工作提供借鉴与参考。

Medical information registration of rare disease cases serves as scientific basis for development of population intervention strategy,improvement of medical service system,better patient medical support level,and higher medicine accessibility.Based on their hospital work,the authors introduced the development practice of an all-dimensional management system for such information registration,in terms of formulating policies,establishing organizational structure,organizing and publicizing policies for the medical service of rare diseases,maintaining registration data and so on,so as to provide the reference for the management of registration work of rare diseases.