《中国局限性硬皮病诊断与治疗指南》计划书  

Protocol for the Development of Chinese Guideline for the Diagnosis and Management of Localized Scleroderma

作　　者：王招荐 马旭达 谢江淼 邹锟 龙笑[1] WANG Zhaojian;MA Xuda;XIE Jiangmiao;ZOU Kun;LONG Xiao(Department of Plastic and Aesthetic Surgery,Peking Union Medical College Hospital,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China;Department of Pharmacy/Evidence-based Pharmacy Center,West China Second University Hospital,Sichuan University,Chengdu 610041,China)

机构地区：[1]中国医学科学院北京协和医院整形美容外科,北京100730 [2]四川大学华西第二医院药学部/循证药学中心,成都610041

出　　处：《协和医学杂志》2024年第6期1311-1317,共7页Medical Journal of Peking Union Medical College Hospital

基　　金：中央高水平医院临床科研专项(2022⁃PUMCH⁃C⁃025)。

摘　　要：局限性硬皮病(localized scleroderma,LoS)是一种慢性自身免疫性皮肤病,主要表现为皮肤及皮下组织的纤维化和硬化,可能累及深部组织及其他器官。目前我国尚缺乏基于循证医学的LoS诊断与治疗指南,导致疾病识别困难,各医疗中心的诊疗策略差异较大。为解决这一难题,依托中华医学会整形外科学分会,中国医学科学院北京协和医院整形美容外科牵头组建全国多中心、多学科专家团队,启动了《中国局限性硬皮病诊断与治疗指南》的制订工作。该指南旨在规范LoS诊疗流程,提高疾病诊疗水平,通过早期识别和干预,改善患者预后。指南制订将遵循国际标准,基于研究证据进行评估,并通过多轮专家组讨论最终形成推荐意见。虽然目前针对中国人群的LoS循证医学证据有限,且缺乏统一的疾病评估金标准,但多学科专家的临床经验将在指南制订中发挥重要作用。我们期待该指南为LoS患者提供更优质的医疗服务,并通过提升患者的认知及参与度,最终降低社会和医疗负担。本指南计划书将详细阐述该指南的制订背景、方法及预期价值,为后续严格制订和顺利发布指南提供指导。Localized scleroderma(LoS)is a chronic autoimmune skin disorder characterized by fibrosis and hardening of the skin and subcutaneous tissues,potentially affecting deeper tissues and other organs.Cur-rently,China lacks evidence-based guidelines for the diagnosis and management of LoS,which poses a chal-lenge to disease recognition and leads to significant variation in treatment strategies across medical centers.To address this problem,we plan to establish a nationwide,multidisciplinary expert team through the Chinese So-ciety of Plastic Surgery to initiate the development of the Chinese Guideline for the Diagnosis and Management of Localized Scleroderma.The guideline aims to standardize the diagnosis and treatment procedures for LoS,im-prove clinical diagnostic and therapeutic capabilities,and enhance patient outcomes through early identification and intervention.The guideline will adhere to international standards,with recommendations formed through ev-idence evaluation and multiple rounds of expert discussions.Although evidence-based data on LoS specific to the Chinese population is currently limited,and no unified gold standard for disease assessment exists,the clin-ical expertise of multidisciplinary specialists will play a pivotal role in the guidelines formulation.We anticipate that this guideline will provide LoS patients with higher-quality medical care and enhance patient awareness and engagement,which may ultimately help reduce social and healthcare burden.This proposal outlines the back-ground,methodology,and anticipated value of the guideline,with the hope of providing guidance for its rigor-ous development and successful publication.

关 键 词：局限性硬皮病 指南 诊断 治疗 计划书 

分 类 号：R593.2[医药卫生—内科学] R181.1[医药卫生—临床医学]