Congenital anomaly surveillance in England - ascertainment deficiencies in the national system
Congenital anomaly surveillance in England - ascertainment deficiencies in the national system
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DOI：
10.1136/bmj.38300.665301.3a
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发表时间：
2005-01-01
影响因子：
105.7
通讯作者：
Wellesley, D
中科院分区：
文献类型：
--
作者：
Boyd, PA;Armstrong, B;Wellesley, D
目的首先，评估国家先天性异常系统（NCAS）的确定的完整性，在英格兰和威尔士的先天性异常监测的基础上，其缺陷的地理区域和社会经济剥夺的变化。第二，评估由于胎儿异常而终止妊娠的数据缺乏的影响。设计NCAS与英格兰四个地方先天性异常登记处的比较。设置英格兰四个地区，每年约有109 000名新生儿。参与者NCAS登记的先天性异常病例（活产和死产）并在四个地方登记处独立登记（活产、死产、妊娠20周后的胎儿丢失，产前诊断胎儿畸形后终止妊娠）国家登记册查明的病例与地方登记档案中的病例的比率，按不同的具体异常情况计算，在整个登记地区，以及注册边界内的医院集水区。（与来自本地寄存器的数据相比，其中终止妊娠被删除）为40%（34%的染色体异常和42%的非染色体异常），并通过缺陷，通过当地登记，并通过医院集水区，但不是由地区剥夺显着变化。当终止妊娠包括在登记数据中时，NCAS的确认率为27%。（19%为染色体异常，31%为非染色体异常），结论目前英国先天性畸形的监测是不够的，因为国家登记册的确定性很低，这是因为没有关于因产前诊断胎儿异常而终止妊娠的数据。
Objective Firstly, to assess the completeness of ascertainment in die National Congenital Anomaly System (NCAS), the basis for congenital anomaly surveillance in England and Wales, and its variation by defect geographical area, and socioeconomic deprivation. Secondly, to assess die impact of the lack of data on pregnancies terminated because of fetal anomaly.Design Comparison of the NCAS with four local congenital anomaly registers in England.Setting Four regions in England covering some 109 000 annual births.Participants Cases of congenital anomalies registered in the NCAS (live births and stillbirths) and independently registered in the four local registers (live births, stillbirths, fetal losses from 20 weeks' gestation, and pregnancies terminated after prenatal diagnosis of fetal anomaly).Main outcome measure The ratio of cases identified by the national register to those in local registry files, calculated for different specified anomalies, for whole registry areas, and for hospital catchment areas within registry boundaries.Results Ascertainment by the NCAS (compared with data from local registers, from which terminations of pregnancy were removed) was 40% (34% for chromosomal anomalies and 42% for non-chromosomal anomalies) and varied markedly by defect, by local register, and by hospital catchment area, but not by area deprivation. When terminations of pregnancy were included in the register data, ascertainment-by NCAS was 27% (19% for chromosomal anomalies and 31% for non-chromosomal anomalies),and the geographical variation was of a similar magnitude.Conclusion The surveillance of congenital anomalies in England is currently inadequate because ascertainment to the national register is low and non-uniform and because no data exist on termination of pregnancy resulting from prenatal diagnosis of fetal anomaly.