开展多学科协作以切实提高结节性硬化症诊疗水平  

Improvement of Diagnosis and Treatment Levels of Tuberous Sclerosis Complex by Multidisciplinary Team Cooperation

作　　者：王俊[1] 吴秀秀[1] 徐凯峰[1] WANG Jun WU Xiu-xiu XU Kai-feng(Department of Respiratory Diseases, Peking Union Medical College Hospital Chi- nese Academy of Medical Sciences, Beijing 100730, China)

机构地区：[1]中国医学科学院北京协和医学院北京协和医院呼吸科,北京100730

出　　处：《临床误诊误治》2016年第10期4-7,共4页Clinical Misdiagnosis & Mistherapy

基　　金：北京市科技计划(Z151100003915126)

摘　　要：结节性硬化症(tuberous sclerosis complex,TSC)是一种涉及多系统、多年龄段人群的遗传性疾病。患者常因不同的临床表现就诊多个专科,很少能够得到多系统、全面的评估,漏误诊现象并不少见。因此,亟须通过多学科协作(multidisciplinary team,MDT)进一步提高我国TSC的诊疗水平。在建立区域性TSC专病门诊和MDT的基础上,应构建全国性TSC协作网络,可以开展临床注册登记、规范化诊疗技术推广及新诊疗技术相关研究,并建立转诊体系和远程会诊系统,以有效提高TSC患者诊治水平,改善患者生活质量,对提高医疗质量、有效利用医疗资源、推动科学研究及科学研究在临床中的转化应用,均有积极意义。Tuberous sclerosis complex （TSC） is a hereditary disease that involves multisystem and different age patients. The patients often visit doctors of different departments, and therefore it is hard to totally evaluate the disease from multisystem, so the missed diagnosis and misdiagnosis of TSC is not rare. It is necessary to improve diagnosis and treatment levels by multidisciplinary team （MDT）cooperation. Based on establishments of TSC regionally special outpatient service and MDT, the TSC nationwide collaboration network is constituted. The network can provide clinical registry, generalization of standard operation principle, the exploration of new technology for diagnosis and treatment, and establishment of transferring consultation and tele-consuhation system so as to improve levels of diagnosis and treatment and quality of life of TSC patients. It has a positive significance in improving medical quality, utilizing medical resource effectively, promoting both scientific research and its clinical transformation and application.

关 键 词：结节性硬化症 多学科协作 诊断 治疗 述评 

分 类 号：R596[医药卫生—内科学]