National Register for Congenital Heart Defects

The National Register for Congenital Heart Defects is the national repository for medical data on patients with congenital heart defects in Germany. To date, almost 40,000 children, adolescents and adults have been registered. At regular intervals, these patients are asked to complete questionnaires on a variety of topics such as progression of disease, life expectancy, quality of life and treatment being received. By evaluating this information, it will for the first time be possible to conduct long-term studies on the epidemiology of congenital heart defects, which are lacking on an international scale.

Extrapolations indicate that the clinical relevance of congenital heart defects can be expected to rise dramatically in the coming years. There are an estimated 200,000 to 300,000 children, adolescents and adults with a congenital heart defect living in Germany today. As they grow older, these patients are likely to encounter health problems and social difficulties. There is a lack of generally applicable research findings on the long-term prognosis for congenital heart defects. Until now, it has not been possible to obtain statistically significant results from studies, because the number of patients being treated in individual heart centres in Germany is too small. To overcome this deficit, all patients as far as possible are to be recorded in the Register.