Research

Epidemiological projects

Euripides Registry

CRT and ICD therapy are still rarely administered to children and adults with congenital heart defects. Through the Euripides Registry, doctors and scientists hope to rapidly gain detailed knowledge that will enable CRT and ICD therapy to be optimised for this group of patients. read more …

Prevalence of CHD in infants (PAN)

This study being conducted under the auspices of the Competence Network for Congenital Heart Defects is the first study to systematically gather data on the prevalence of congenital heart defects in newborn infants in Germany. Its objective is to produce an inventory of heart deformities occurring among birth-year cohorts in Germany. The study started in July 2006. read more …

Genetic

This study aims to identify gene mutations that cause congenital heart defects, using molecular genetics tests. The tests are performed on blood samples from members of families with a frequent occurrence of heart defects. read more …

Quality of life and social situation (LESSIE)

The LESSIE study is the first nation-wide statistical survey of the health-related quality of life and social situation of adults with congenital heart defects. read more …

Communication

Many young patients and their parents complain that they are poorly informed about their disease. A patient survey aims to identify the information-related behaviour and information needs of patients with congenital heart defects. read more …

Sense of coherence (CoalaH study)

A sense of coherence is a postulated model that might explain why many children and adolescents with heart defects perceive the quality of their lives as good. A survey of adolescents aged 14 to 17 is being conducted to verify whether this sense of coherence is associated with their self-assessed health-related quality of life. read more …