National Rare Diseases Registry System (NRDRS): China’s first nation-wide rare diseases demographic analyses

Orphanet Journal of Rare Diseases

Weihong Gu¹  Haohan Lv¹  Jie Li¹  Weichao Yu¹  Rachel Yang²  Zhuang Tian³  Shuyang Zhang³  Jian Guo⁴  Limeng Chen⁵  Yicheng Zhu⁶  Kaifeng Xu⁷  Peng Liu⁸  Ye Jin⁸  Zhihong Wu⁸ 

[1] The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;China Alliance for Rare Diseases (CHARD), Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;Department of Cardiology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;Department of Cardiology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;Medical Research Center, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;Department of Nephrology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;Department of Neurology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;Department of Respiratory and Critical Care Medicine, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;The Administrative Group of National Rare Diseases Registry System of China, 100730, Beijing, China;Medical Research Center, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, 100730, Beijing, China;

关键词: China;    Rare diseases;    Registry;    Database;   

DOI  :  10.1186/s13023-021-02130-7

来源: Springer

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