Recommendation 5

     

Recommendation 5Invest in research to support clinical decision-making.   

Information on congenital CMV is limited and what does exist is out of date. This is severely hampering our ability to monitor treatments and longer-term outcomes for children affected by cCMV. 

More investment is needed to gather knowledge and data on which we can make sound, evidence-based clinical decisions. Parents would welcome tests at birth that could provide guidance on the severity of symptoms their child is likely to suffer from. 

The safety and cost effectiveness of treatment during pregnancy should be evaluated. While this clearly includes research into the efficacy and cost of new drugs, attention should also be given to new diagnostic techniques such as foetal MRI or blood sampling for early identification of babies who may benefit from anti-viral treatment. 

 

     

Our Stories

I had a very normal, straightforward pregnancy. Other than towards the end, my bump wasn't measuring big enough, so I was sent for 2 growth scans. Both we're fine and baby was also fine... Read more
Our Story – Orla and Cytomegalovirus. On the 2nd July 2018 my wife Hannah went in to labour, it was unremarkable (at least as much as such a thing is) and Orla was born shortly after we... Read more

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