Patients

The Congenital CMV Network (cCMVNET) is a European initiative promoting international collaboration, research and educational activities for cCMV. In 2020 the Network established the European cCMVNET registry of children collecting data on epidemiology, clinical characteristics, long term sequelae, and treatment of infants born with cCMV.

Currently, cCMVnet has 157 members working in different European Hospitals and Research Centres. Most of our network members are from: UK, Spain, and Greece. Every month, we expand this list, adding new professionals and countries to the CCMVNET community.

Members of cCMVnet can benefit from access to education, virtual clinics and European expertise on congenital CMV. Professionals can also apply for ethics to join and enter patients into our cCMVnet registry, contributing to international research into this disease. We encourage all members of the healthcare team to join cCMVnet including : doctors, nurses, audiologists, physiotherapists and speech and language therapists.

CCMV NET AIMS

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:

  • Raise the profile of cCMV, and the impact it can have on children and families
  • Bring together a wide international group of CCMV expertise, including: paediatricians, obstetricians, hearing and vestibular function specialists, virologists, immunologists, epidemiologists, statisticians, clinical trialists, etc.
  • Obtain consent from parents, to collect prospective anonymised data on children with CCMV to better understand the spectrum of the condition.
  • 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.
  • Review relationship of outcomes to early treatment.
  • Collate data on epidemiology and clinical characteristics of cCMV
  • Evaluate risk factors for long term sequelae
  • Evaluate prognostic value of neonatal variables (eg microbiological & imaging)
  • Document treatment strategies and outcomes in children with cCMV
  • Identify any long term side effects of treatment including: malignancy / teratogenicity, etc..
  • Provide educational opportunities and clinical support, for healthcare professionals looking after children with cCMV.