State Key Laboratory of Experimental Hematology, National Clinical Research Center for Blood Diseases, Institute of Hematology & Blood Diseases Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College, Tianjin Laboratory of Blood Disease Gene Therapy, CAMS Key Laboratory of Gene Therapy for Blood Diseases, Tianjin, China.
Departments of Medicine, Pediatrics and Oncology, University of Calgary Cumming School of Medicine, The Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, Foothills Medical Centre, Alberta Health Services, Calgary, AB, Canada.
Haemophilia. 2020 Sep;26(5):759-767. doi: 10.1111/hae.14101. Epub 2020 Jul 14.
There is a large population of people with haemophilia in China. However, the development of haemophilia care in China lagged far behind developed countries and was unbalanced across different regions. With the establishment of the Hemophilia Treatment Center Collaborative Network of China (HTCCNC) in 2004 and its collaboration with the Chinese government, the World Federation of Haemophilia (WFH), non-profit foundations, industries, and experts from other countries, haemophilia care in China have made considerable strides in building capacity. The HTCCNC helped develop clinics throughout the country, promote multidisciplinary care, promote prophylaxis (albeit low-dose), advance clinical evaluation and treatment, and research. With many collaborative efforts in the past decade, haemophilia care in China has entered a new stage of development. In this review, we summarize these major achievements and efforts within the last decade.
中国有大量的血友病患者。然而,中国的血友病护理发展远远落后于发达国家,且地区间发展不平衡。2004 年中国血友病治疗中心协作网(HTCCNC)成立,并与中国政府、世界血友病联盟(WFH)、非营利基金会、行业和其他国家的专家合作,中国的血友病护理在能力建设方面取得了长足的进步。HTCCNC 帮助全国各地建立了诊所,促进多学科护理,推广预防治疗(尽管是低剂量),推进临床评估和治疗以及研究。在过去十年中的许多合作努力下,中国的血友病护理进入了一个新的发展阶段。在这篇综述中,我们总结了过去十年中的这些主要成就和努力。