罕见病多学科诊疗服务体系构建的分析及思考  

Analysis and consideration on the construction of multi-disciplinary team service system for rare diseases

作　　者：马晓碗 龚力[1,2] 何谦[1,2] 卜嘉彬 贾丹[2] MA Xiaowan;GONG Li;HE Qian;BU Jiabin;JIA Dan(Rare Diseases Center,West China Hospital,Sichuan University,Chengdu,Sichuan 610041,P.R.China;Outpatient Department,West China Hospital,Sichuan University,Chengdu,Sichuan 610041,P.R.China)

机构地区：[1]四川大学华西医院罕见病中心,成都610041 [2]四川大学华西医院门诊部,成都610041

出　　处：《华西医学》2024年第1期93-97,共5页West China Medical Journal

摘　　要：罕见病是一类发病率及患病率极低的疾病,具有诊断难、治疗难、用药难等特点。多学科诊疗(multi-disciplinary team,MDT)目前已经成为现代医疗主要诊治模式。国内外多家医院已经开始将MDT应用在罕见病诊疗过程中。该文针对国内外罕见病MDT模式进行介绍,重点阐述四川大学华西医院罕见病MDT服务体系开展模式、工作流程与内容,同时探讨目前罕见病MDT服务体系建设的问题及优化建议,旨在为我国罕见病MDT模式的创建提供一定的参考。Rare diseases are a kind of diseases with very low incidence and prevalence.They are difficult to diagnose,treat and use drugs.Multi-disciplinary team(MDT)has become the main mode of modern medical diagnosis and treatment.Many hospitals at home and abroad have begun to apply MDT in the diagnosis and treatment of rare diseases.This paper introduces the MDT mode of rare diseases at home and abroad,focusing on the mode,work flow and content of the MDT service system for rare diseases in West China Hospital of Sichuan University,and discusses the problems and optimization suggestions of the current construction of the MDT service system for rare diseases.The purpose is to provide some reference for the establishment of MDT model of rare diseases in China.

关 键 词：罕见病 多学科诊疗 服务体系 

分 类 号：R197.3[医药卫生—卫生事业管理]