Objectives and tasks of the centre
The objective of the Centre for Rare Congenital Heart Diseases is to continuously improve the diagnosis and care of children and adolescents with rare congenital heart defects, such as complex structural heart defects (e.g. hypoplastic left heart syndromeCertain signs of the disease occurring together in combination., transposition of the great vessels, tetralogy of Fallot(TOF) Congenital complex heart defect, named after the French physician Etienne Fallot and consisting of a large, short-circuit connection between the ventricles of the heart (VSD), a malposition of the body’s aorta and a narrowing in the area of the outflow tract of the right ventricle (RVOTO). This can lead to reduced blood flow in the lungs. Sufferers of this condition have a blue-red colour of the face (cyanosis)., Ebstein anomaly), cardiomyopathies in childhood, congenital arrhythmia(Lat.: irregular sequence) Is considered a collective term for disorders of the regular, rhythmic heartbeat sequences. This includes all pulse sequences that are not regular: phases of pulse beats at different speeds, pauses, skips or additional beats. syndromes or familial coronaryConcerning the coronary vessels that supply blood to the heart muscle. heart disease. The prevalence of these diseases is less than 1 in 2000. Diagnosis requires modern imaging techniques and, in some cases, molecular genetic testing. The treatment and care of the patients requires a highly specialised, interdisciplinary team consisting of paediatric cardiologists, cardiac surgeons, anaesthetists, geneticists, neurologists, cardiologists, physiotherapists and psychologists. The mortality and morbidity of affected patients has been significantly reduced in recent years through advances in imaging, surgical techniques, percutaneousThrough the skin. transcatheter interventions, technology and molecular genetics. Various research groups at the German Heart Centre Munich contribute to the evidence-based medical care of these patients with rare diseases through clinical studies and basic research in the laboratory for experimental paediatric cardiology, as well as in collaboration with other scientists, leading to new insights into the pathogenesis of diseases at cellular and molecular level.
The tasks of the Centre for Rare Congenital Heart Diseases are:
- Guideline-based diagnostics and clinical care of patients based on the latest scientific findings
- Interdisciplinary collaboration with cardiac surgeons, anaesthetists, geneticists, neurologists, cardiologists, physiotherapists and psychologists for holistic assessment, optimal risk stratification, clinical care, therapy, and counselling of affected patients and their families.
- Recording of clinical and genetic data in centre-specific databases and in the central register of the KNAHF (Competence Network for Congenital Heart Defects)
- Continuation of the biomaterial bank (DNA, tissue) of the DHM
- Determination and implementation of interdisciplinary coordinated diagnostic and therapeutic concepts
- Organisation of regular interdisciplinary case conferences
- Promotion of innovations in the field of research into rare congenital heart defects (clinical studies, care studies, fundamental research).
- Continuous further development of the quality management system
- Joint public relations work by the participating institutions
- Organisation of training and further education events and conferences
- Improving teaching through participation in curricular teaching
- Cooperation with networks at national and international level to improve care for people with rare congenital heart defects
