title: Representativeness of the German National Register for Congenital Heart Defects: a clinically oriented analysis.
abstract: BACKGROUND
  Approximately 6000 children are born with CHD in Germany each year. It is increasingly rare that these children die from their chronic illness. In the present study, data recorded in the National Register for Congenital Heart Defects with respect to the prevalence of specific lesions and sex distribution are compared with that recorded in a published German prevalence study (Prevalence Study) and with the meta-analysis by van der Linde et al.
  
  
  METHODS
  A descriptive data analysis was performed using a minimal data set. The demographic data included sex and birth year; the medical data comprised the cardiovascular diagnosis according to the short list of the International Paediatric and Congenital Cardiac Code.
  
  
  RESULTS
  As the data analysis shows, the National Register is a clinical register including primarily clinical cases/cases relevant to healthcare. The prevalence values and sex ratios recorded in the register are closer to the values given in the literature than those determined by the Prevalence Study. Severe CHD was slightly over-represented in the National Register compared with the van der Linde et al meta-analysis. The deviations with respect to prevalence values are within an acceptable range.
  
  
  CONCLUSIONS
  With its 48,000 patients, the National Register plays a unique and important role for research in the field of CHD. Samples from the National Register can be used as a gold standard for future studies, as the patient population registered in it can be considered representative of CHD in Germany and Europe.
authors.affiliation: 1National Register for Congenital Heart Defects,BerlinGermany.
authors.forename: Paul C
authors.initials: PC
authors.lastname: Helm
authors.affiliation: 1National Register for Congenital Heart Defects,BerlinGermany.
authors.forename: Marc-André
authors.initials: MA
authors.lastname: Koerten
authors.affiliation: 1National Register for Congenital Heart Defects,BerlinGermany.
authors.forename: Hashim
authors.initials: H
authors.lastname: Abdul-Khaliq
authors.affiliation: 1National Register for Congenital Heart Defects,BerlinGermany.
authors.forename: Helmut
authors.initials: H
authors.lastname: Baumgartner
authors.affiliation: 1National Register for Congenital Heart Defects,BerlinGermany.
authors.forename: Deniz
authors.initials: D
authors.lastname: Kececioglu
authors.affiliation: 1National Register for Congenital Heart Defects,BerlinGermany.
authors.forename: Ulrike M M
authors.initials: UM
authors.lastname: Bauer
mesh_terms: D003430:Cross-Sectional Studies; D005858:Germany; D006330:Heart Defects, Congenital / Q000145:classification* / Q000453:epidemiology*; D006801:Humans; D015201:Meta-Analysis as Topic; D012042:Registries; D017678:Sex Distribution
keywords: CHD; clinical register; prevalence; representative; sex distribution