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About Us

Why We Do Research

“How old can I actually get?” Doctors of patients with congenital heart disease often hear this question. This and other pressing questions. May I do sports? Can I pursue my dream job? Will I be able to have children of my own?

Many of these questions can be answered much better already today. This is only possible thanks to collaborative research in a strong network.

The Most Frequent Congenital Malformation

Day by day, heart specialists save the lives of children with congenital heart disease.

Heart disease is the most frequent congenital malformation. According to estimates, between 6,000 and 7,000 children are born with this condition in Germany each year. Over ninety percent nowadays reach adulthood. This was unimaginable until well into the seventies of the past century. Great advancements in pediatric cardiology, cardiac surgery and anesthesia enable many patients to lead a largely normal life. A life, however, with a chronic illness.

Research Determines Quality of Life

After successful treatment, some patients do not have complaints at all. Most patients, however, depend on continuous medical care. We urgently need to get a better understanding of the causes of heart defects and of their long-term effects on the patients’ health.

Today, about 300,000 patients with congenital heart disease are living in Germany alone. Their quality of life and social inclusion rely on the question whether we succeed in generating scientific evidence regarding single heart defects and potential secondary diseases, and whether we manage to swiftly transfer this evidence to specialized healthcare. All this can only be accomplished with targeted research.

  • Good To Know

    From Research to Practice

    Results and Projects

    Dr. Ulrike Bauer, Scientific Managing Director of the Competence Network for Congenital Heart Defects and the National Register for Congenital Heart Defects © Wolfram Scheible für Nationales Register
    Dr. Ulrike Bauer, Scientific Managing Director of the Competence Network for Congenital Heart Defects and the National Register for Congenital Heart Defects

    Our collaborative research aims to produce results that benefit those affected by congenital heart disease in both everyday life and the medical setting as quickly as possible.

    Numerous findings from healthcare research, clinical research and genetic research by the Competence Network for Congenital Heart Defects have already found their way into clinical practice, where they contribute to a significant improvement of the medical care provided to the patients in question. For instance, new and binding medical standards, as well as reference values help diagnosing and treating congenital heart disease and its sequelae.

    Be it medical guidelines, new examination and health care standards, less painful or invasive treatment options or suitable preventive measures: The data and samples donated by more than 55,000 Register members contribute to medical progress.


A Representative Basis

There are many various kinds of congenital heart disease. Individual ones are so rare that one research institution alone is hardly capable of collecting sufficient data or samples to find answers to many pressing questions.

In order to facilitate research in this field at all, we founded the National Register for Congenital Heart Defects in 1999. Here, physicians, patients and scientists collect and manage data and samples and provide them for individual research projects. In 2000, we were able to start the systematic collection of patient data. Since then, more and more patients have self-registered in the Register. Thanks to their voluntary participation, we have a comprehensive database that is crucial for significant research results.

Register Members Do Us All a Great Service

Today, the Register is Europe’s largest patient database. In 2016, we were happy to welcome Jonas from Leipzig, our 50,000th registered heart patient. By donating their data and samples, “heart-experts” such as Jonas and their relatives do all individuals with congenital heart disease a great service. Today, congenital heart disease research can access data and samples from more than 60,000 patients. Meanwhile, many of our research results have brought about improvements in diagnostics, treatment and preventive care.

Are You Already Taking Part in Research?

Research in the field of congenital heart disease has already yielded important advancements that benefit the patients. However, it is still young. There are still many unresolved issues. It remains our mutual goal to keep contributing to an improved healthcare for these patients with every single research project. So that those affected can lead a life as good as possible from their first day of life up until old age.

Our research consequently focuses on the patients’ welfare. It depends on the commitment of many researchers, as well as on continuous non-material and financial support, especially by public sources. Without it, our goal of ideal medical care would be utopian, as it would be without the longstanding support by the Register’s members.

Together, we can achieve a lot. The more patients, physicians, researchers and funders participate, the better.

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