Areas of research
Clinical research
The main focus of the Network’s clinical research lies on therapy and prevention studies on functional disturbances of the right ventricle and pulmonary circulation, given that very little is known about these problems at present. Patients who have undergone heart surgery as children often suffer complications in later life, affecting the right ventricle and pulmonary circulation. Other clinical research activities include the development of treatment guidelines and diagnostic standards for echocardiography, magnetic resonance imaging, and exercise tolerance.
Healthcare research
What conditions must be met to allow a young woman who has undergone surgery for heart disease to become pregnant and carry an infant to term? How resistant are young adults to the stresses of professional life or when exercising a sporting activity? Do patients with a congenital heart defect feel that they are sufficiently informed about their illness? Very few scientific studies exist to shed light on these and other similar questions. The National Register for Congenital Heart Defects was set up to conduct studies on a variety of healthcare issues. By identifying the questions that need to be resolved, and seeking appropriate solutions, it is hoped that patients will be able to receive the support they need.
Basic research
What are the causal factors of heart malformations? Which genes are responsible? Should those affected fear that they might pass on the disease to their offspring? The competence network is conducting studies aiming to identify specific genes that give rise to congenital heart defects, and to reveal possible clustering within a single family. A databank of biomaterial samples has also been established.
Epidemiological research
It is estimated that 6,000 children are born in Germany each year with a heart defect. The exact number is unknown. A nation-wide prevalence study has been launched to find out precisely how many children are affected, with the ultimate aim of improving the planning of healthcare facilities and adapting them to real needs. The National Register for Congenital Heart Defects serves as one of the principal sources of epidemiological data for paediatric cardiology in Germany. The epidemiological studies place a special emphasis on the patients’ quality of life and the long-term progression of the disease.
More detailed information on the studies being conducted by the competence network.
