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摘要: 血友病是一种遗传性出血性疾病，属于罕见病的一种。其疾病特点为遗传性、终身性及致残性。国家血友病登记系统的建设是开展血友病关怀工作的基础。中国早在1996年即开始开展纸质版血友病登记工作，并在2007年升级成为网页版血友病登记系统。2009年原卫生部办公厅决定建立中国血友病病例信息管理制度后，在前期工作基础上，中国正式建立了国家血友病登记系统。目前已经有超过200家医院参与登记工作。国家血友病登记系统也为血友病流行病学研究、疾病特征研究以及相关政策制定打下基础。Abstract: Hemophilia is an inherited bleeding disorder and a type of rare disease that is hereditary, lifelong and disabling. The establishment of a National Hemophilia Registry is foundational to treating hemophilia. The initial registry of hemophilia in China was first established using the paper form in 1996 and upgraded to online system in 2007. Following the China's Ministry of Health's decision to establish a national hemophilia case information management system in 2009, China has officially established a National Hemophilia Registry based on previous work. More than 200 hospitals have been involved in this work. The National Hemophilia Registry also provides the basis for the study of hemophilia epidemiology, disease characteristics and related policy formulation.
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Key words:
- hemophilia /
- rare diseases /
- registry
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[1] Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition[J]. Haemophilia, 2020, 26: 1-158. doi: 10.1111/hae.14112 [2] 全国血友病研究协作组. 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: 461-463. [3] Iorio A, Stonebraker JS, Chambost H, et al. Establishing the prevalence and prevalence at birth of hemophilia in males: a Meta-analytic approach using national registries[J]. Ann Intern Med, 2019, 171: 540-546. doi: 10.7326/M19-1208 [4] Evatt B. World Federation of Hemophilia Guide to Developing a National Patent Registry. 2005[EB/OL]. (2011-04-08)[2022-07-07]. https://www1.wfh.org/publications/files/pdf-1288.pdf. [5] 卫生部办公厅. 卫生部办公厅关于建立血友病病例信息管理制度的通知(卫办医政函〔2009〕981号)[Z]. 北京: 中华人民共和国卫生部, 2009. [6] Song X, Zhong J, Xue F, et al. An overview of patients with haemophilia A in China: epidemiology, disease severity and treatment strategies[J]. Haemophilia, 2021, 27: e51-e59. [7] Zhang W, Song X, Dou X, et al. Demographics, clinical profile and treatment landscape of patients with haemophilia B in China[J]. Haemophilia, 2022, 28: e56-e60. -
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