血友病中心建设标准探讨

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英文篇名：Tentative standard for the establishment of hemophilia center 作者：杨仁池 英文作者：Hemophilia Treatment Center Collaborative Network of China; 关键词：血友病 ; 中心 ; 标准 ; 诊断 ; 治疗 英文关键词：hemophilia;;center;;standard;;diagnosis;;treatment 中文刊名：LCXZ 英文刊名：Journal of Clinical Hematology 机构：中国血友病协作组;中国医学科学院血液学研究所血液病医院; 出版日期：2019-02-22 10:06 出版单位：临床血液学杂志 年：2019 期：v.32;No.235 基金：中国医学科学院医学与健康科技创新工程重大协同创新项目(No:2016-I2M-002);; “十三五”国家重点研发计划精准医学研究重点专项(No:2016YFC0901503) 语种：中文; 页：LCXZ201902023 页数：4 CN：02 ISSN：42-1284/R 分类号：21-24

摘要

<正>近年来,罕见病越来越受到社会各界的关注。作为罕见病的典型代表,血友病防治体系的建设起步较早:1985年由已故杨天楹教授发起成立全国血友病协作组,于1986年至1989年组织全国24省市37个地区进行调查,初步查明我国血友病的患
        Hemophilia centers have been proved to be key factors for delivering optimal hemophilia care.To date,more than 100 hemophilia centers(HTCs)are established and involved in national hemophilia registry in China.These centers varied widely in sizes and expertise.In order to set quality standards for HTCs and criteria for their certification,agroup of experts in the Hemophilia Treatment Center Collaborative Network of China drafted these standards.The first level is called hemophilia treatment center which can only provide general service for hemophilia patients.The second level is called hemophilia diagnosis and treatment center which has capacity to make accurate diagnosis and identify various complications beside general medical service.The tertiary center is called hemophilia comprehensive care center which can provide multidiscipline comprehensive care for hemophilia patients.

引文

[1]全国血友病协作组,邵宗鸿,杨天楹.中国血友病患病率与八个地区生存率调查[J].中华血液学杂志,1992,13(9):461-463.
    [2]Giangrande P,Calizzani G,Menichini I,et al.The European standards of haemophilia centres[J].Blood Transfus,2014,12(Suppl 3):s525-s530.
    [3]Dunkley S,Lam JCM,John MJ,et al.Principles of haemophilia care:The Asia-Pacific perspective[J].Haemophilia,2018,24:366-375.