AIMES-E: Assessing the long-term IMpact of Early Surgical care in children born with Exomphalos
Aim
To conduct future research studies to look at parent and child reported outcomes in children born with exomphalos over the longer term.
Background
Exomphalos is a very rare condition with only approximately 75 babies born in the UK every year. Because of this, even a hospital providing specialist children's surgery will only see a few babies with exomphalos over this time period. In order to work out what are the best ways of treating exomphalos, we need to learn how children are in all aspects of their lives, especially from the point of view of their parents.
For this reason we are asking parents of children born with exomphalos in the UK over a two-year period from March 2014 – March 2016 if they would like to take part future in research studies. These studies will involve asking parents questions via postal or email questionnaire. Having lots of parents take part will provide essential information to help the treatment of future children born with exomphalos and the counselling of their parents.