In 2007, a prospective multicentre registry was set up to collect data on incidence and outcome of children with congenital cytomegalovirus infection in Flanders. A consensus was reached about management and follow up of cytomegalovirus-infected children. With this registration, we aimed at gathering information on congenital cytomegalovirus infection in Flanders and evaluating the consensus on management and therapy. Children with proven congenital cytomegalovirus infection were eligible for registration in the database. Information on prenatal and neonatal management, therapy and follow up until 6 years was obtained. Between 2007 and 2017, 686 children were registered. Data on the prenatal and neonatal characteristics in children with congenital cytomegalovirus infection are reported.Conclusion: In this article, we report on our experience of conducting a registry for cCMV in Flanders. Eleven years of collecting data on CMV in a multicenter setting have shown us some pitfalls and opportunities. We address some of the problems and aim at improving our data gathering. We encourage other groups to share their data. Better knowledge of the burden of the disease will be important to guide future management strategies.
Keywords: Congenital infection; congenital cytomegalovirus infection; database; limitations; registry; strengths.