dc.contributor.author | Christianson, A | en_US |
dc.contributor.author | Cousens, S | en_US |
dc.contributor.author | Darlison, M | en_US |
dc.contributor.author | Gibbons, S | en_US |
dc.contributor.author | Hamamy, H | en_US |
dc.contributor.author | Khoshnood, B | en_US |
dc.contributor.author | Howson, CP | en_US |
dc.contributor.author | Lawn, JE | en_US |
dc.contributor.author | Mastroiacovo, P | en_US |
dc.contributor.author | Modell, B | en_US |
dc.contributor.author | Moorthie, S | en_US |
dc.contributor.author | Morris, JK | en_US |
dc.contributor.author | Mossey, PA | en_US |
dc.contributor.author | Neville, AJ | en_US |
dc.contributor.author | Petrou, M | en_US |
dc.contributor.author | Povey, S | en_US |
dc.contributor.author | Rankin, J | en_US |
dc.contributor.author | Schuler-Faccini, L | en_US |
dc.contributor.author | Wren, C | en_US |
dc.contributor.author | Yunis, KA | en_US |
dc.date.accessioned | 2018-07-16T08:36:27Z | |
dc.date.issued | 2018-10-01 | en_US |
dc.date.submitted | 2018-04-02T14:20:54.827Z | |
dc.identifier.issn | 1868-310X | en_US |
dc.identifier.uri | http://qmro.qmul.ac.uk/xmlui/handle/123456789/42145 | |
dc.description.abstract | © 2018, The Author(s). In the absence of intervention, early-onset congenital disorders lead to pregnancy loss, early death, or disability. Currently, lack of epidemiological data from many settings limits the understanding of the burden of these conditions, thus impeding health planning, policy-making, and commensurate resource allocation. The Modell Global Database of Congenital Disorders (MGDb) seeks to meet this need by combining general biological principles with observational and demographic data, to generate estimates of the burden of congenital disorders. A range of interventions along the life course can modify adverse outcomes associated with congenital disorders. Hence, access to and quality of services available for the prevention and care of congenital disorders affects both their birth prevalence and the outcomes for affected individuals. Information on this is therefore important to enable burden estimates for settings with limited observational data, but is lacking from many settings. This paper, the third in this special issue on methods used in the MGDb for estimating the global burden of congenital disorders, describes key interventions that impact on outcomes of congenital disorders and methods used to estimate their coverage where empirical data are not available. | en_US |
dc.description.sponsorship | The time of SM and HB was funded in part through a grant from the Bill and Melinda Gates Foundation to the Child Health Epidemiology Reference Group (CHERG). The work of BM and MD was supported in part by grants from the WHO Regional Office for the Eastern Mediterranean. | en_US |
dc.format.extent | 363 - 376 | en_US |
dc.language.iso | en | en_US |
dc.relation.ispartof | Journal of Community Genetics | en_US |
dc.rights | This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. | |
dc.title | Methods to estimate access to care and the effect of interventions on the outcomes of congenital disorders | en_US |
dc.type | Article | |
dc.rights.holder | © The Author(s) 2018 | |
dc.identifier.doi | 10.1007/s12687-018-0359-3 | en_US |
pubs.issue | 4 | en_US |
pubs.notes | Not known | en_US |
pubs.publication-status | Published | en_US |
pubs.volume | 9 | en_US |