Thanks to enormous advances in medicine, even severe congenital heart defects can be effectively treated today. The number of adults with congenital heart defects (ACHD) is increasing by around five per cent each year. However, as yet, too little is known about congenital heart disease and potential sequelae. 

To improve and prolong the lives of people with congenital heart defects, we need a better understanding of the genetic causes of the disease, as well as the causes and risk factors for long-term problems and premature death.

The Competence Network for Congenital Heart Defects (KNAHF) has established the infrastructure necessary for related research projects in Germany. At KNAHF, multicentre and interdisciplinary research is conducted on congenital heart defects and heart disease in children and adolescents – across all stages of life and age groups.

Congenital heart defects are primary diseases with very heterogeneous clinical patterns. As a result, single hospitals and research institutions are hardly able to collect sufficient data and samples for research. The Competence Network for Congenital Heart Defects was therefore established to create a network that would ensure reliable, independent research based on a broad range of data and samples. This is made possible by its core facility: the National Register for Congenital Heart Defects, which is one of the world's largest patient databases in this field.

Enabling Research

The Competence Network for Congenital Heart Defects was founded in 2003 within the framework of the initiative Competence Networks in Medicine, which was launched by the Federal Ministry of Education and Research (BMBF). The Competence Network’s core facility is the National Register for Congenital Heart Defects. By setting-up the Register, the Competence Network created the prerequisites for international multicenter research in the field of congenital heart disease. More than 60,000 patients and relatives of patients contribute by donating their data and samples. Thanks to its comprehensive treasure of data and samples, the National Register provides scientists with a validated and representative research basis.

As of August 2009, the Competence Network for Congenital Heart Defects was established as a registered scientific association. As such, it ensures independent and sustainable research. Over 30 universities, hospitals and research institutions, as well as pediatric cardiologists in private practice, cardiologists, rehabilitation physicians and scientists from all over the nation, including all pediatric heart centers in Germany, take part in the research network.

Ensuring the Transfer to Clinical Practice

The Competence Network has established a close exchange with patients’ associations and support groups. This is in line with the goal of generating research results that are aimed at the patients’ wellbeing and that find their way into clinical practice as swiftly as possible.

From medical basic research via clinical research through to healthcare research: Meanwhile, numerous research results generated by the Competence Network contribute to a better understanding of the causes and sequelae of congenital heart disease, as well as of appropriate measures of early detection, treatment and preventive care.

New diagnostic methods and forms of treatment have been developed. Furthermore, improvements in the medical care infrastructure for patients, as well as the cardiologic training for medical professionals were achieved.

Until 2014, the Competence Network for Congenital Heart Defects received its funding primarily from the Federal Ministry of Education and Research (BMBF). From 2015 to 2021, the German Centre for Cardiovascular Research (DZHK) supported it as an associated partner.

From 2022 to 2024, the BMBF will be the main funding body of the National Register for Congenital Heart Defects. The research network is supported by numerous institutions including, among others, the major cardiac societies, parents’ initiatives and patient associations, research institutions, foundations and representatives from industry. Friede Springer is the network’s patron.

Until today, clinical practice shows quite plainly the urgency of international joint research across locations. Many questions have yet to be answered to make a good life for all those affected possible, starting with the first heart beat through to old age.