Modell, B;
Darlison, MW;
Malherbe, H;
Moorthie, S;
Blencowe, H;
Mahaini, R;
El-Adawy, M;
(2018)
Congenital disorders: epidemiological methods for answering calls for action.
[Editorial comment].
Journal of Community Genetics
, 9
pp. 335-340.
10.1007/s12687-018-0390-4.
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Abstract
The importance of congenital disorders (also called birth defects) as a cause of early death and disability becomes increasingly apparent as countries pass through the development window and background mortality falls (Malherbe et al. 2015). Consequently, there is growing recognition of the need for their care and prevention, particularly in low- and middle-income countries. In 2010, the World Health Assembly (WHA) expressed concern that birth defects are still not recognised as a priority in public health, and called upon its member states to strengthen the prevention of congenital disorders and provision of care for those affected (World Health Assembly 2010). Nevertheless, the 2015 International Conference on Birth Defects and Disabilities in the Developing World concluded that “as the Sustainable Development Goals are adopted by United Nations member states, children with congenital disorders remain left behind in policies, programs, research, and funding” (Darmstadt et al. 2016). In fact, two WHO regional offices (those for the Eastern Mediterranean and South-East Asia) have responded to the call from World Health Assembly. In the process, both have encountered important barriers to the development of health policy in this area. Firstly, policy requires a sound epidemiological base, but in most middle- and low-income countries, the combination of (a) limited resources for the correct and accurate diagnosis of congenital disorders and (b) inadequate information systems leads to gross under-estimation of the contribution of congenital disorders to early death and disability (Christianson et al. 2006; Christianson and Modell 2004; World Health Organization 1999). Secondly, the extreme diversity of congenital disorders makes them difficult to grasp collectively at a strategic public health level. Thirdly, these problems are compounded by failure to agree and implement precise and rigorous technical terminology (World Health Organization 2006). The database described in the following articles—the Modell Global Database of Congenital Disorders (MGDb)—has been developed in order to overcome these barriers to service development.
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