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Representativeness of the German National Register for Congenital Heart Defects: a clinically oriented analysis
Paul C Helm1, Marc-André Koerten1, Hashim Abdul-Khaliq1
11National Register for Congenital Heart Defects,BerlinGermany.
Insights
The German National Register for Congenital Heart Defects (CHD) is a valuable resource, with its data closely aligning with existing literature on prevalence and sex distribution. This register serves as a representative gold standard for future CHD research.
Area of Science:
- Cardiology
- Pediatrics
- Public Health
Background:
- Approximately 6000 children are born with congenital heart defects (CHD) in Germany annually.
- Mortality rates for children with chronic CHD have significantly decreased.
- This study compares National Register data with a published German prevalence study and a meta-analysis.
Purpose of the Study:
- To compare the prevalence and sex distribution of CHD in the National Register with existing literature.
- To assess the representativeness of the National Register for CHD research.
Main Methods:
- Descriptive data analysis of a minimal data set.
- Inclusion of demographic (sex, birth year) and medical data (cardiovascular diagnosis).
- Utilized the International Paediatric and Congenital Cardiac Code for diagnosis.
Main Results:
- The National Register primarily includes clinical and healthcare-relevant cases.
- Prevalence values and sex ratios in the register closely match literature data, outperforming a previous German prevalence study.
- Severe CHD cases were slightly over-represented compared to the van der Linde meta-analysis, but deviations were acceptable.
Conclusions:
- The National Register, with 48,000 patients, is a unique and crucial resource for CHD research.
- The patient population in the register is considered representative of CHD in Germany and Europe.
- Data from the National Register can serve as a gold standard for future research studies.
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.
