摘要
目的:回顾地中海贫血防治工作突出的典型国家和我国地中海贫血防控体系建设情况,总结地中海贫血防控经验,对我国地中海贫血防控提出建议。方法:在PubMed、EMBASE、Web of science和CNKI数据库中检索塞浦路斯、意大利、泰国、马来西亚和我国地中海贫血防控的文献。在中国国家卫生健康委员会官网等政府官方网站检索2009年以来的地中海贫血政策文件。结果:典型国家从地中海贫血知识强化教育、基因筛查、产前诊断和遗传咨询、规范化治疗等方面建设地中海贫血防控网络。我国基本形成政府主导、医院执行、社会组织为辅的地中海贫血防控模式。结论:我国应继续完善地中海贫血防控计划,开展以家系为基础的人群地中海贫血筛查,加强地中海贫血临床诊疗能力的建设,建立国家地中海贫血登记处,并加强地中海贫血国际合作,推动共建“一带一路”倡仪。
OBJECTIVE To review the typical countries with outstanding progress in the policies on thalassemia prevention and the prevention of thalassemia in China,summarize the practical experience in the prevention of thalassemia in typical countries,and provide policy reference for the prevention of thalassemia in China.METHODS The literature of thalassemia prevention in Cyprus,Italy,Thailand and Malaysia was searched in PubMed,EMBASE,Web of Science databases.Thalassemia policy documents since 2009 were retrieved from official government websites such as the official website of National Health Commission of the People’s Re⁃public of China.RESULTS Typical countries build a thalassemia prevention network in terms of intensive education on thalassemia knowledge,genetic screening,prenatal diagnosis and genetic counseling,and provision of standardized treatment modalities.China has basically formed a thalassemia prevention model led by the government,implemented by hospitals and supplemented by social or⁃ganizations.CONCLUSION China should continue to improve the thalassemia prevention program,carry out family-based population screening for thalassemia,strengthen the construction of clinical diagnosis and treatment capacity for thalassemia,establish a nation⁃al thalassemia registry,and strengthen international cooperation on thalassemia to develop the“the Belt and Road”strategy.
作者
罗冰星
翁俊岭
乔静怡
袁家琪
严俊涛
明坚
魏艳
陈英耀
Luo Bingxing;Weng Junling;Qiao Jingyi;Yuan Jiaqi;Yan Juntao;Ming Jian;Wei Yan;Chen Yingyao(School of Public Health,Fudan University,Shanghai,200032,China)
出处
《中国初级卫生保健》
2023年第12期24-27,共4页
Chinese Primary Health Care
关键词
地中海贫血
政策
防控
thalassemia
policy
prevention
