Estimating the birth prevalence and pregnancy outcomes of congenital malformations worldwide
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ORIGINAL ARTICLE
Estimating the birth prevalence and pregnancy outcomes of congenital malformations worldwide Sowmiya Moorthie 1 & Hannah Blencowe 2 & Matthew W. Darlison 3 & Joy Lawn 2 & Joan K. Morris 4 & Bernadette Modell 3 & Congenital Disorders Expert Group & A. H. Bittles & H. Blencowe & A. Christianson & S. Cousens & M. W. Darlison & S. Gibbons & H. Hamamy & B. Khoshnood & C. P. Howson & J. Lawn & P. Mastroiacovo & B. Modell & S. Moorthie & J. K. Morris & P. A. Mossey & A. J. Neville & M. Petrou & S. Povey & J. Rankin & L. Schuler-Faccini & C. Wren & K. A. Yunnis Received: 26 September 2017 / Accepted: 29 August 2018 # The Author(s) 2018
Abstract Congenital anomaly registries have two main surveillance aims: firstly to define baseline epidemiology of important congenital anomalies to facilitate programme, policy and resource planning, and secondly to identify clusters of cases and any other epidemiological changes that could give early warning of environmental or infectious hazards. However, setting up a sustainable registry and surveillance system is resource-intensive requiring national infrastructure for recording all cases and diagnostic facilities to identify those malformations that that are not externally visible. Consequently, not all countries have yet established robust surveillance systems. For these countries, methods are needed to generate estimates of prevalence of these disorders which can act as a starting point for assessing disease burden and service implications. Here, we describe how registry data from highincome settings can be used for generating reference rates that can be used as provisional estimates for countries with little or no observational data on non-syndromic congenital malformations. Keywords Congenital malformations . Prevalence . Pregnancy outcomes . Estimation
Abbreviations CHD Congenital Heart Disease EUROCAT European Surveillance of Congenital Anomalies and Twins This article is part of the Topical Collection on Epidemiological Methods in Community Genetics
ICBDSR MGDb NSCM OFC TOPFA UN WPP
International Clearinghouse for Birth Defects Surveillance and Research Modell Database of Congenital disorders Non-syndromic congenital malformations Orofacial cleft Termination of pregnancy for fetal anomaly United Nations World Population Prospects
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s12687-018-0384-2) contains supplementary material, which is available to authorized users. * Matthew W. Darlison [email protected] 1
PHG Foundation, 2 Worts Causeway, Cambridge, UK
2
Centre for Maternal, Adolescent, Reproductive, and Child Health, London School of Hygiene and Tropical Medicine, London, UK
3
Centre for Health Informatics and Multiprofessional Education (CHIME), University College London, London, UK
4
Centre for Environmental and Preventive Medicine, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK
Introduction The Modell
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