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Information on congenital CMV is limited and what does exist is out of date.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

Braden-10days-old
June 2012 I was 14 weeks pregnant when my husband showed me a full torso rash that he had. I was already aware that my immunity to Rubella had dropped so sent him off to the Doctors... Read more
2015 We found out in January 2017 just after Gabe’s first birthday that he had Congenital CMV.  I had a great pregnancy and a delivery with no problems. However he was born with... Read more

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