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
If you would like to know more about CCMVNET, do please make contact with us at ccmvnet@gmail.com
