Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies

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 fe...

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Veröffentlicht in:Birth defects research. A Clinical and molecular teratology 2011-03, Vol.91 (S1), p.S23-S30
Hauptverfasser: Loane, Maria, Dolk, Helen, Garne, Ester, Greenlees, Ruth
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container_title Birth defects research. A Clinical and molecular teratology
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creator Loane, Maria
Dolk, Helen
Garne, Ester
Greenlees, Ruth
description 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. Birth Defects Research (Part A), 2011. © 2011 Wiley‐Liss, Inc.
doi_str_mv 10.1002/bdra.20779
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subjects Abortion, Induced - statistics & numerical data
ascertainment
completeness
Congenital Abnormalities - epidemiology
congenital anomalies
data quality
Europe - epidemiology
Female
Fetal Death - epidemiology
Humans
Population Surveillance
Pregnancy
Prenatal Diagnosis
Prevalence
registries
Registries - statistics & numerical data
Research Design
Validation Studies as Topic
title Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies
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