Loane Maria, Dolk Helen, Garne Ester, Greenlees Ruth
EUROCAT Central Registry, Centre for Maternal, Fetal and Infant Research, University of Ulster, Newtownabbey, Co Antrim, Northern Ireland, United Kingdom.
Birth Defects Res A Clin Mol Teratol. 2011 Mar;91 Suppl 1:S23-30. doi: 10.1002/bdra.20779. Epub 2011 Mar 7.
The European Surveillance of Congenital Anomalies (EUROCAT) network of population-based congenital anomaly registries is an important source of epidemiologic information on congenital anomalies in Europe covering live births, fetal deaths from 20 weeks gestation, and terminations of pregnancy for fetal anomaly. EUROCAT's policy is to strive for high-quality data, while ensuring consistency and transparency across all member registries. A set of 30 data quality indicators (DQIs) was developed to assess five key elements of data quality: completeness of case ascertainment, accuracy of diagnosis, completeness of information on EUROCAT variables, timeliness of data transmission, and availability of population denominator information. This article describes each of the individual DQIs and presents the output for each registry as well as the EUROCAT (unweighted) average, for 29 full member registries for 2004-2008. This information is also available on the EUROCAT website for previous years. The EUROCAT DQIs allow registries to evaluate their performance in relation to other registries and allows appropriate interpretations to be made of the data collected. The DQIs provide direction for improving data collection and ascertainment, and they allow annual assessment for monitoring continuous improvement. The DQI are constantly reviewed and refined to best document registry procedures and processes regarding data collection, to ensure appropriateness of DQI, and to ensure transparency so that the data collected can make a substantial and useful contribution to epidemiologic research on congenital anomalies.
欧洲先天性异常监测（EUROCAT）网络是基于人群的先天性异常登记系统，是欧洲先天性异常流行病学信息的重要来源，涵盖活产、妊娠20周后的死胎以及因胎儿异常而终止妊娠的情况。EUROCAT的政策是在确保所有成员登记处数据一致性和透明度的同时，努力获取高质量数据。为此制定了一套30个数据质量指标（DQIs），以评估数据质量的五个关键要素：病例确定的完整性、诊断的准确性、EUROCAT变量信息的完整性、数据传输的及时性以及人口分母信息的可用性。本文描述了每个单独的DQI，并展示了2004 - 2008年29个正式成员登记处中每个登记处的输出结果以及EUROCAT（未加权）平均值。这些信息在EUROCAT网站上也可获取往年数据。EUROCAT DQIs使登记处能够评估自身相对于其他登记处的表现，并对所收集的数据做出适当解读。这些指标为改进数据收集和确定提供了方向，并允许进行年度评估以监测持续改进情况。DQI会不断进行审查和完善，以最好地记录有关数据收集的登记程序和流程，确保DQI的适当性，并确保透明度，以便所收集的数据能够对先天性异常的流行病学研究做出重大且有用的贡献。
