杨仁池. 中国血友病防治体系建设现状与展望[J]. 罕见病研究, 2022, 1(4): 365-369. DOI: 10.12376/j.issn.2097-0501.2022.04.001
引用本文: 杨仁池. 中国血友病防治体系建设现状与展望[J]. 罕见病研究, 2022, 1(4): 365-369. DOI: 10.12376/j.issn.2097-0501.2022.04.001
YANG Renchi. Establishment of Care System for Hemophilia in China: Current Status and Future Prospect[J]. Journal of Rare Diseases, 2022, 1(4): 365-369. DOI: 10.12376/j.issn.2097-0501.2022.04.001
Citation: YANG Renchi. Establishment of Care System for Hemophilia in China: Current Status and Future Prospect[J]. Journal of Rare Diseases, 2022, 1(4): 365-369. DOI: 10.12376/j.issn.2097-0501.2022.04.001

中国血友病防治体系建设现状与展望

Establishment of Care System for Hemophilia in China: Current Status and Future Prospect

  • 摘要: 血友病是一种X染色体连锁的隐性遗传性出血性疾病,患者需要终身接受凝血因子替代治疗。医务人员、患者本人及其家属对于本病的认识、治疗药物的可及性、医保政策等都会影响血友病的防治水平。本文将对中国血友病防治体系的建设进行梳理,包括加入世界血友病联盟(WFH)、成立中国血友病协作组(HTCCNC)、建立全国血友病病例信息管理制度、成立患者组织等,同时对于国内血友病分级诊疗的临床实践进行阐述,供从事罕见病诊疗与政策制订的有关人员参考。

     

    Abstract: Hemophilia is a X-linked recessive hereditary bleeding disorders. The patients need to receive replacement treatment with coagulation factors in their whole lives. The medical care of hemophilia depends on the awareness of the medical professionals, patients, and their family members; on the accessibility to the medication for treatment; on the insurance policies, and etc. This article presents the forming process of the medical care for hemophilia in China, including joining the World Federation of Hemophilia(WFH), forming the Hemophilia Treatment Center Collaborative Network of China(HTCCNC), initiating the national hemo-philia registry system, and organizing hemophilia patients associations. In the meantime, the article presents the clinical practice of tiered care system for hemophilia in China, providing reference to the medical professionals and policy makers involving in the care of rare diseases in China.

     

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