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CCMVET – CMV Registry

By April 20, 2021December 20th, 2021No Comments

CMV Action is delighted to be working with Hermione Lyall of Imperial College Healthcare NHS Trust and other eminent clinicians in the UK on membership of CCMVNET. 

CCMVNET is a European clinical network, including a registry of children affected by congenital CMV,  which will enable us to better understand the condition, push for better diagnosis and treatment, as well as education of the public and healthcare professionals.  UK membership of the network is currently undergoing the necessary process of ethics approval, therefore applications to the registry and not yet open, but we will bring you further news of this exciting project as it progresses

Message from Dr Hermione Lyall for CCMV Awareness month

Everyone needs to learn about congenital CMV infection!

As a paediatric infectious diseases doctor, I have looked after children with congenital CMV (CCMV) infection for more than 20 years. Over that time we have seen some small improvements in what we can do for children with CCMV, including in diagnosis and treatment, but this has not moved along nearly as fast as for other viruses, and I think CCMV is still the “Cinderella Congenital Infection”.

Many of my paediatric colleagues across Europe also agree, so in 2020 we joined together to form a clinical Network call CCMVNET, to better understand the condition, push for better diagnosis and treatment, as well as education of the public and healthcare professionals. 


  • Internationally, congenital cytomegalovirus infection (CCMV), is a neglected cause of deafness, cerebral palsy, seizures, and communication, coordination & learning difficulties in children.
  • Around one in 200 children born in Europe have congenital CMV infection, but most of them are never diagnosed with the condition, and consequently do not get access to treatment, if they need it.
  • Most countries do not undertake routine antenatal or postnatal screening for this infection, so the only children who are diagnosed and offered treatment are either those with symptoms at birth, or those who fail the new born hearing screening test.
  • Few members of the general public have heard of CMV. Most pregnant women, and even some healthcare workers have never heard of this virus and the risk of congenital transmission, yet all know about toxoplasmosis & cats, and listeria & soft cheese, both much rarer congenital infections than CCMV.
  • This lack of knowledge about CMV, means that pregnant women are not able to make choices to reduce the risk of CMV transmission to their babies, and the needs of children with CCMV remain largely invisible.
  • Current treatment for infants with Congenital CMV is aimed at preserving hearing and optimising neurodevelopmental outcomes. Treatment with a six month course of an oral anti-viral medication called valganciclovir should ideally be started in the first month of life.
  • Valganciclovir has both short term and potential long terms side effects. In animal studies it has been shown to have carcinogenic and teratogenic effects, although this has not been demonstrated in humans, to date.
  • There is no prospective international registry of children with CCMV exposed to valganciclovir, or indeed other medications, so the risk of long-term treatment effects after exposure in infancy remains unknown.


As a group of clinicians across Europe caring for children with CCMV we have joined together in 2020 to establish an international paediatric registry of children with congenital CMV. The aim of the registry is to learn as much as we can about CCMV, we will:

  • Obtain consent from parents, to collect prospective anonymised data on children with CCMV to better understand the spectrum of the condition.
  • Bring together a wide international group of CCMV expertise, including: paediatricians, obstetricians, hearing and vestibular function specialists, virologists, immunologists, epidemiologists, statisticians, clinical trialists, etc.
  • Review relationship of outcomes to early treatment.
  • Identify any long term side effects of treatment including: malignancy / teratogenicity.
  • Build experience of a large international clinical cohort, which can then be used to design prospective clinical trials of new therapies.
  • Work in collaboration with families and young people with CCMV in design and use of the registry.
  • Promote research and education in CCMV and disseminate useful information about CCMV to the general public, and clinicians.

If you would like to know more about CCMVNET, do please make contact with us at