| dc.description.abstract | Birth defects, also known as congenital disorders, are a signifcant health issue impacting at least fve million births annually
worldwide. For policymakers to mount a relevant healthcare response to care for those afected, the burden of disease of
these conditions must be quantifed. Estimates of the contribution of birth defects to under-5 child mortality and morbidity
are generated by several groups globally. These estimates often difer, causing confusion for policymakers. While some differences may be attributed to the data sources and methods used, much is due to a lack of clarity in the terminology used for
the group of disorders classed as “congenital”. This study aimed to gain insight into the diversity of terms and defnitions
for birth defects, including those used routinely by relevant international/national organisations and in the peer-reviewed
literature. This two-part study included (1) scoping review of peer-reviewed literature to identify terms and defnitions in
use for birth defects and (2) review of key websites and grey literature to identify terms and defnitions used. The results of
this study indicate a wide variety of terms being used, often interchangeably and undefned, in peer-reviewed publications,
on institutional websites and related literature. This suggests a lack of clarity related to terminology and sets the scene for
further discussion, recommending that the community of practice working on birth defects comes to a consensus on standard
terminology and defnitions for global uptake and implementation. Such standardisation will facilitate a common understanding of the burden of these disorders globally, regionally and within countries so that action can be taken to support afected
children and their families | en_US |
