The Congenital Cytomegalo-Virus Network
cCMVNET is a network, a group of healthcare professionals with an interest in congenital cytomegalo-virus [cCMV]. The aim is to build an international network for exchange of information and to create a cCMVnet registry/database.
Monthly virtual meetings / “clinics” allow to discuss management options for tricky cases and share the experiences people have. A dedicated website for Education (health-care and public sections) is under development.
Various research activities use the information from the registry as well as target other projects. The organisation received 20,000 euros from ESPID in April. The organisation is growing rapidly with 58 professional members and around 750 ‘patients’ or their family members. 50 institutions from 17 countries are already represented.
About cCMVNET: the Congenital CMV Network
- It 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.
- 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.
- CMV is not well known among the public, but it should as people can take simple measured to reduce the risk of cCMV. Most pregnant women, and even some healthcare workers have never heard of the risk of congenital transmission, yet much is known about toxoplasmosis & cats, and listeria & soft cheese.
- At present all that can be done is treating the infants with Congenital CMV to preserve hearing and optimising neurodevelopmental outcomes.
- There is no prospective international registry of treated children with CCMV, so the risk of long-term treatment effects after exposure in infancy remains unknown.
We need to raise awareness and act globally and locally.
Their Twitter handle is @ccmvnet
Some more information on CCMVET – CMV Registry | CMV Action (the above is adapted from this website)
Contact through ccmvnet@gmail.com
