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Representativeness of the German National Register for Congenital Heart Defects: a clinically oriented analysis

Published online by Cambridge University Press:  07 October 2015

Paul C. Helm ,
Marc-André Koerten ,
Hashim Abdul-Khaliq ,
Helmut Baumgartner ,
Deniz Kececioglu  and
Ulrike M. M. Bauer
Paul C. Helm
Affiliation:
National Register for Congenital Heart Defects, BerlinGermany
Marc-André Koerten
Affiliation:
National Register for Congenital Heart Defects, BerlinGermany
Hashim Abdul-Khaliq
Affiliation:
National Register for Congenital Heart Defects, BerlinGermany Department of Paediatric Cardiology, Saarland University Medical Center, HomburgGermany
Helmut Baumgartner
Affiliation:
National Register for Congenital Heart Defects, BerlinGermany Center for Adults with Congenital Heart Defects (EMAH-Center), University Hospital Muenster, MuensterGermany
Deniz Kececioglu
Affiliation:
National Register for Congenital Heart Defects, BerlinGermany Heart and Diabetes Center North Rhine-Westphalia, Center for Congenital Heart Defects, Bad OeynhausenGermany
Ulrike M. M. Bauer*
Affiliation:
National Register for Congenital Heart Defects, BerlinGermany Competence Network for Congenital Heart Defects, Berlin, Germany
*
Correspondence to: Dr U. M. M. Bauer, Kompetenznetz Angeborene Herzfehler e. V., Augustenburger Platz 1, 13353 Berlin, Germany. Tel: +49 304 593 7277; Fax: +49 304 593 7278; E-mail: ubauer@kompetenznetz-ahf.de
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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.

Conclusion

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.

Keywords

CHDprevalenceclinical registerrepresentativesex distribution
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 5 , June 2016 , pp. 921 - 926
Copyright
© Cambridge University Press 2015 

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