Doing Research while Ensuring Transfer

The Competence Network for Congenital Heart Defects conducts research in the field of congenital heart disease and heart disease in childhood and adolescence that focuses on disease mechanisms, new treatment options, as well as on the current situation of health care provided to affected children, adolescents and adults in Germany. 

In our network, physicians, scientists, patient organizations and the industry join forces. This approach ensures research that is consequently oriented towards the needs of the patients and at the same time facilitates a quick transfer of our research results into clinical practice.

Ethics Approvals

All research activities within the National Register for Congenital Heart Defects, which is the core project of the Competence Network, involving the biorepository, the register and its subregisters are covered by approvals of the responsible Ethical Review Board of the Charité - Universitaetsmedizin Berlin. If needed, the Competence Network for Congenital Heart Defects Study Management provides support to researchers and research institutions with proposals for required subsequent ethics approvals. Research within the Competence Network for Congenital Heart Defects is based on written informed consent that is obtained from respective data and sample donors. Each written informed consent follows the current recommendations of the "Arbeitskreises medizinischer Ethik-Kommissionen in der Bundesrepublik Deutschland e. V." (German work group of medical ethical review boards).

Basic Research

How does a heart malformation develop? Which genes are involved? Do those affected have to worry about the possibility of passing on a heart defect? Based on the biobank of the National Register for Congenital Heart Defects, the Competence Network conducts studies aiming to identify genes that are responsible for congenital heart disease. In this context, familial clusterings are specifically investigated regarding hereditary correlations. At the same time, research on the organ’s regenerative capacity and on the genetic mechanisms impairing or promoting it is conducted at the Competence Network. The results of our genetic and molecular biologic basic research are conductive to the development of ideal prevention and treatment methods to improve the long-term prognosis of those affected.

Clinical Research

Our clinical research focuses on studies investigating malfunctions of the right heart and the pulmonary circulation. Only little is known about these problems so far. After heart surgery in childhood, patients often have secondary diseases that affect the right heart and the pulmonary circulation. Our study results can be used to derive guidelines for treatment and prevention. Furthermore, our clinical research aims to facilitate the development of diagnostic standards for measurements such as echocardiography, magnetic resonance imaging and exercise tolerance tests. The development of pharmaceuticals and medical devices that are suitable for children also depends on register-based clinical research.

Healthcare Research

Under which conditions can young women with operated heart defects become pregnant and carry a child to full term? What is the exercise tolerance of children with congenital heart disease in school and sports? How do patients rate their own level of information regarding their disease? At the Competence Network for Congenital Heart Defects, we seek to answer these and further questions with our health care research projects, all of which are based on the National Register for Congenital Heart Defects. This seem to be the only way to close the healthcare gap and to lay the foundation for adequate specialized treatment of this chronic disease.