Estimating the birth prevalence and pregnancy outcomes of congenital malformations worldwide
Autor: | Sowmiya, Moorthie, Hannah, Blencowe, Matthew W, Darlison, Joy, Lawn, Joan K, Morris, Bernadette, Modell, 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 |
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Rok vydání: | 2018 |
Předmět: |
0301 basic medicine
medicine.medical_specialty Epidemiology 030105 genetics & heredity 03 medical and health sciences 0302 clinical medicine Environmental health Prevalence medicine 030212 general & internal medicine Baseline (configuration management) Genetics (clinical) Disease burden Congenital malformations Estimation Pregnancy outcomes Warning system business.industry Public health Public Health Environmental and Occupational Health Original Article Observational study business |
Zdroj: | Journal of Community Genetics |
ISSN: | 1868-6001 1868-310X |
DOI: | 10.1007/s12687-018-0384-2 |
Popis: | 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 high-income 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. Electronic supplementary material The online version of this article (10.1007/s12687-018-0384-2) contains supplementary material, which is available to authorized users. |
Databáze: | OpenAIRE |
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