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罕见病指南的制订:现状、挑战与机遇

周奇 李沁原 刘雅莉 罗征秀 张卫社 陈彤 李国保 商洪才 杨克虎 张波 陈耀龙 张抒扬

周奇, 李沁原, 刘雅莉, 罗征秀, 张卫社, 陈彤, 李国保, 商洪才, 杨克虎, 张波, 陈耀龙, 张抒扬. 罕见病指南的制订:现状、挑战与机遇[J]. 协和医学杂志. doi: 10.12290/xhyxzz.2022-0360
引用本文: 周奇, 李沁原, 刘雅莉, 罗征秀, 张卫社, 陈彤, 李国保, 商洪才, 杨克虎, 张波, 陈耀龙, 张抒扬. 罕见病指南的制订:现状、挑战与机遇[J]. 协和医学杂志. doi: 10.12290/xhyxzz.2022-0360
ZHOU Qi, LI Qinyuan, LIU Yali, LUO Zhengxiu, ZHANG Weishe, CHEN Tong, LI Guobao, SHANG Hongcai, YANG Kehu, ZHANG Bo, CHEN Yaolong, ZHANG Shuyang. The Development of Guidelines for Rare Diseases: Past, Present and Future[J]. Medical Journal of Peking Union Medical College Hospital. doi: 10.12290/xhyxzz.2022-0360
Citation: ZHOU Qi, LI Qinyuan, LIU Yali, LUO Zhengxiu, ZHANG Weishe, CHEN Tong, LI Guobao, SHANG Hongcai, YANG Kehu, ZHANG Bo, CHEN Yaolong, ZHANG Shuyang. The Development of Guidelines for Rare Diseases: Past, Present and Future[J]. Medical Journal of Peking Union Medical College Hospital. doi: 10.12290/xhyxzz.2022-0360

罕见病指南的制订:现状、挑战与机遇

doi: 10.12290/xhyxzz.2022-0360
基金项目: 

中央高校基本科研业务费专项资金资助(lzujbky-2021-ey13)

详细信息
    通讯作者:

    陈耀龙,E-mail:chevidence@lzu.edu.cn

  • 中图分类号: R181.2

The Development of Guidelines for Rare Diseases: Past, Present and Future

Funds: 

Fundamental Research Funds for the Central Universities (lzujbky-2021-ey13)

  • 摘要: 罕见病发病率虽然极低,但7000多种罕见病却影响着全球6%~8%的人群。罕见病临床实践指南作为改善罕见病患者健康结局的指导性文件发挥着越来越重要的作用。本文将系统阐述国内外罕见病指南的研究现状、面临的挑战以及当前的机遇,并在此基础上提出推动我国罕见病指南发展的思考与建议。
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出版历程
  • 收稿日期:  2022-06-28
  • 录用日期:  2022-08-08
  • 网络出版日期:  2022-08-22

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