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Congenital cytomegalovirus infection registry in Flanders : opportunities and pitfalls

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Abstract
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, registry, database, strengths, limitations, HEARING-LOSS, PREVENTION, DIAGNOSIS, CONSENSUS, CHILDREN

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MLA
Keymeulen, Annelies, et al. “Congenital Cytomegalovirus Infection Registry in Flanders : Opportunities and Pitfalls.” ACTA CLINICA BELGICA, 2020, doi:10.1080/17843286.2019.1683262.
APA
Keymeulen, A., De Leenheer, E., Goderis, J., Dhooge, I., Smets, K., & Flemish Society of Pediatrics’ Neonatology and Perinatal Epidemiology Working group for cCMV infection, the. (2020). Congenital cytomegalovirus infection registry in Flanders : opportunities and pitfalls. ACTA CLINICA BELGICA. https://doi.org/10.1080/17843286.2019.1683262
Chicago author-date
Keymeulen, Annelies, Els De Leenheer, Julie Goderis, Ingeborg Dhooge, Koenraad Smets, and the Flemish Society of Pediatrics’ Neonatology and Perinatal Epidemiology Working group for cCMV infection. 2020. “Congenital Cytomegalovirus Infection Registry in Flanders : Opportunities and Pitfalls.” ACTA CLINICA BELGICA. https://doi.org/10.1080/17843286.2019.1683262.
Chicago author-date (all authors)
Keymeulen, Annelies, Els De Leenheer, Julie Goderis, Ingeborg Dhooge, Koenraad Smets, and the Flemish Society of Pediatrics’ Neonatology and Perinatal Epidemiology Working group for cCMV infection. 2020. “Congenital Cytomegalovirus Infection Registry in Flanders : Opportunities and Pitfalls.” ACTA CLINICA BELGICA. doi:10.1080/17843286.2019.1683262.
Vancouver
1.
Keymeulen A, De Leenheer E, Goderis J, Dhooge I, Smets K, Flemish Society of Pediatrics’ Neonatology and Perinatal Epidemiology Working group for cCMV infection the. Congenital cytomegalovirus infection registry in Flanders : opportunities and pitfalls. ACTA CLINICA BELGICA. 2020;
IEEE
[1]
A. Keymeulen, E. De Leenheer, J. Goderis, I. Dhooge, K. Smets, and the Flemish Society of Pediatrics’ Neonatology and Perinatal Epidemiology Working group for cCMV infection, “Congenital cytomegalovirus infection registry in Flanders : opportunities and pitfalls,” ACTA CLINICA BELGICA, 2020.
@article{8634163,
  abstract     = {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.},
  author       = {Keymeulen, Annelies and De Leenheer, Els and Goderis, Julie and Dhooge, Ingeborg and Smets, Koenraad and Flemish Society of Pediatrics' Neonatology and Perinatal Epidemiology Working group for cCMV infection, the},
  issn         = {1784-3286},
  journal      = {ACTA CLINICA BELGICA},
  keywords     = {Congenital infection,congenital cytomegalovirus infection,registry,database,strengths,limitations,HEARING-LOSS,PREVENTION,DIAGNOSIS,CONSENSUS,CHILDREN},
  language     = {eng},
  title        = {Congenital cytomegalovirus infection registry in Flanders : opportunities and pitfalls},
  url          = {http://dx.doi.org/10.1080/17843286.2019.1683262},
  year         = {2020},
}

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