The Competence Network
Researching for Sustainable Innovations
If you want to keep your ability to compete internationally in the field of medicine you will need more than isolated efforts. Cutting-edge research can only be achieved in networks. This is especially true of investigating rare diseases such as congenital heart disease. The international research needed here requires structures that assure patient-oriented research in accordance with ethical standards.
To allow innovations to result in a sustainable improvement of medical care and health maintenance, the Competence Network for Congenital Heart Defects provides a platform at which physicians and scientists closely collaborate with patient associations, as well as partners from the industry. At the Competence Network for Congenital Heart Defects, all research and healthcare institutions caring for patients with congenital heart disease collaborate. They comprise institutions such as hospitals, rehabilitation centers and medical practices of pediatric cardiology or cardiology. This facilitates multidisciplinary research.
Ensuring the Quality of Research and Care
Treating congenital heart disease is a highly complex matter. Multidisciplinary teams of specialists need to cooperate for patients to receive optimal healthcare. Diagnostic and therapeutic procedures have to be tested for efficacy and safety over the long term. Moreover, binding standards have to be defined. The research carried out at the Competence Network for Congenital Heart Defects enables the development of guidelines which ensure the quality of healthcare provided to patients with congenital heart disease.
Our research focuses on the patient. Thanks to the multidisciplinary collaboration of application research and basic research, the most recent scientific results find their way into clinical practice more quickly. Translation is ensured by measures such as further training for both doctors and patients or continuous and easy-to-understand science communication.
Data Privacy Comes First
Networked research faces both scientists and data privacy officials with particular challenges. The coalition of hospitals, centers and research institutions leads to high-level scientific results. In this context, highly sensitive data have to be managed in a way as to reliably safeguard the data privacy rights of the patients, researchers and treating physicians. To this end, we collaborated with the Technologie- und Methodenplattform für die vernetzte medizinische Forschung e. V. (TMF; the umbrella organization for networked medical research in Germany). Together, we developed a sustainable data security policy for running an IT infrastructure that meets the highest security standards.