Of an estimated 3000 children born with congenital CMV infection each year in England, ≈500 are expected to have long-term adverse sequelae, most commonly sensorineural hearing loss; fewer than half will have clinically-apparent symptoms at birth. Currently, babies are not routinely screened for CMV infection at birth in the UK and better information is needed about the consequences of congenital CMV infection to inform decisions around neonatal screening and treatment.
This project will inform future studies on the consequences of congenital CMV for child health. Its objectives are to explore how best to ascertain outcomes relevant to questions on congenital CMV in a future study (e.g. hearing, neurodevelopment), including whether (or which) routine data sources in the UK have data of sufficient quality on these outcomes; to explore appropriate comparison group(s), ethical implications and acceptability of different study design options; and to synthesise findings and input from an interdisciplinary collaborative research network to develop a proposal for a future study.