Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres.
Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres.
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DOI：
10.1111/hae.13998
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发表时间：
2020-05
期刊：
影响因子：
--
通讯作者：
Buckner TW
中科院分区：
文献类型：
--
作者：
Soucie JM;Miller CH;Dupervil B;Le B;Buckner TW
对美国血友病人口的规模和特征的估计是医疗保健规划和资源需求评估所必需的。位于美国各地的综合血友病治疗中心(HTCs)网络接受联邦政府的支持，以诊断和管理血友病和其他罕见的出血性疾病。使用HTC网络评估美国男性血友病的发病率和流行率。在2012-2018年间，收集了所有访问HTC的男性的未识别监控数据，其中包括出生年份、性别、种族、西班牙裔族裔、居住邮政编码、血友病类型和严重程度。所有患者的数据被用来计算血友病类型、严重程度和居住状态的时期患病率。来自1995年至2014年出生的患者子集的数据被用来估计这20年期间的发病率。在该段期间，共有21 748名患有血友病的男性前往血友病控制中心就诊，经年龄调整后的发病率为每10万名男性中有15.7人患上血友病(血友病甲12人，血友病乙3.7人)。白人的患病率(15.1)高于黑人(12.4)或西班牙裔(12.4)。各州的患病率从1.6/10万到23.3/10万不等。基于指标期内出生的9587名男性，血友病的平均发病率为每4334名男婴中有1例血友病。根据这些数据，我们估计，目前美国有29 761至32 985名男性血友病患者，其中大部分在专门的临床中心接受全面护理。
Estimates of the size and characteristics of the US haemophilia population are needed for healthcare planning and resource needs assessment. A network of comprehensive haemophilia treatment centres (HTCs) located throughout the United States receives federal support for diagnosis and management of haemophilia and other rare bleeding disorders. Estimate the incidence and prevalence of haemophilia among US males using the HTC network. During the period 2012–2018, de-identified surveillance data were collected on all males who visited an HTC that included year of birth, gender, race, Hispanic ethnicity, residence zip code, haemophilia type and severity. Data from all patients were used to calculate period prevalence by haemophilia type, severity and state of residence. Data from a subset of patients born 1995–2014 were used to estimate incidence rates over the 20-year period. During the period, 21 748 males with haemophilia visited the HTCs resulting in an age-adjusted prevalence of 15.7 cases per 100 000 males (12 for haemophilia A and 3.7 for haemophilia B). Prevalence was higher among whites (15.1) than blacks (12.4) or Hispanics of either race (12.4). State-specific prevalence varied from 1.6 to 23.3 cases per 100 000. Based on 9587 males born during the index period, the average haemophilia incidence was 1 case per 4334 live male births. Based on these data, we estimate that there are between 29 761 and 32 985 males with haemophilia living in the United States today, the majority of whom receive comprehensive care in specialized clinical centres.
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