Mission
Top-level research calls for a networking approach
Any medical research group that hopes to make an impact on an international scale will make no progress if it works in isolation. Top-level research requires a networking approach, and networks need a solid, durable foundation to seed innovations. Hence the horizontal structure chosen by the Competence Network for Congenital Heart Defects, in which medical doctors and researchers from hospitals and rehabilitation clinics throughout Germany work together with practising paediatric and general cardiologists. Efficient, top-quality research into this syndrome depends on the co-operation of all relevant research institutes and healthcare institutions.
Assuring the quality of research and healthcare provision
The treatment of congenital heart defects is a highly complex matter. Patients will only receive the best care if they can rely on the co-operation of interdisciplinary teams of experts. Diagnostic and treatment methods need to be fully tested in respect of their long-term efficacy and safety. It is for this reason that the scientists collaborating in the Competence Network for Congenital Heart Defects are working on guidelines to assure the quality of treatment offered to CHD patients.
Research for humanity
The human element plays a central role in our research activities. By creating interdisciplinary links between fundamental and applied research, we aim to accelerate the transfer of the latest scientific findings into practical applications, and ultimately ensure that patients with congenital heart defects receive the best care possible. Through informative brochures, our Internet site, and special seminars for doctors and patients, we aim to keep everyone up to date on the latest research findings.
Data protection is a top priority
When researchers work together in distributed networks, data protection issues represent an additional challenge. Whilst it is certainly beneficial for a large number of clinics to work together in a competence network, sharing the results of their research to augment their level of expertise, the data to which they gain access in this way poses new, complex and delicate questions as to how to preserve its confidentiality. Network-based research calls for secure IT solutions that respect the data privacy rights of patients, researchers and practising physicians. The Competence Network for Congenital Heart Defects is therefore developing a new data security concept in collaboration with TMF, a non-profit association devoted to the development of a secure platform for shared medical research networks in Germany.
