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

Details

Serval ID
serval:BIB_22E86167C97E
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
Paper 3: EUROCAT data quality indicators for population-based registries of congenital anomalies.
Journal
Birth Defects Research. Part A, Clinical and Molecular Teratology
Author(s)
Loane M., Dolk H., Garne E., Greenlees R.
Working group(s)
EUROCAT Working Group
Contributor(s)
Haeusler M., Nelen V., Verellen-Dumoulin C., Barisic I., Randrianaivo H., Khoshnood B., Doray B., Queisser-Luft A., Rissmann A., O'Mahony M., McDonnell B., Mullaney C., Calzolari E., Romagna E., Bianchi F., Gatt M., Bakker M., Melve KK., Latos-Bielenska A., Dias CM., Salvador J., Arriola L., Addor MC., Wertelecki W., Draper E., Rankin J., Boyd P., Tucker D., Wellesley D.
ISSN
1542-0760 (Electronic)
ISSN-L
1542-0752
Publication state
Published
Issued date
03/2011
Volume
91 Suppl 1
Number
Suppl. 1
Pages
S23-S30
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't ; Review
Publication Status: ppublish
Abstract
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.
Keywords
Abortion, Induced/statistics & numerical data, Congenital Abnormalities/epidemiology, Europe/epidemiology, Female, Fetal Death/epidemiology, Humans, Population Surveillance, Pregnancy, Prenatal Diagnosis, Prevalence, Registries/statistics & numerical data, Research Design, Validation Studies as Topic
Pubmed
Web of science
Open Access
Yes
Create date
16/02/2012 12:32
Last modification date
20/08/2019 14:00
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