Research Basis of the National Register
Donated Data in the Register
Basic Data for Your Research
The National Register for Congenital Heart Defects collects and manages the data and samples from all congenital heart disease patients in Germany. Scientists engaging in most diverse disciplines across the world use them as a basis for their research projects.
Over 55,000 patients, as well as their relatives, have enrolled in the register.
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Good to Know
Data Protection and Pseudonymization
The National Register for Congenital Heart Defects is based on an individual-related and pseudonymized collection of data and samples. This ensures data and samples to be assigned to respective patients while preventing the possibility of drawing conclusions about the latter’s identity. This approach ensures the collections’ quality and inhibits multiple registration of single individuals. Furthermore, research results are verifiable and reliable even in the case of long-term studies.
Patient security and data protection to their full extent are paramount. Hence, patients’ personal and identifying data (IDAT) are stored and processed separately from medical data (MDAT) and sample-related data (BDAT). The different databases can only be accessed by individuals with appropriate access rights. These are controlled by a defined rights and roles concept. The concept of data security, which has been designed for this specific purpose, is registered with the Berlin Official for Data Protection and Freedom of Information with no. 531.390.
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Nationwide Participation
The National Register for Congenital Heart Defects comprises patients from across the country. The following chart gives you an overview of registrations by federal states.
Number of patients registered in the register by place of residence in relation to 1 million inhabitants of the population of the respective federal state. Status: August 2024
Heart defects by diagnosis groups
There is a multitude of different heart defects. The following charts give a first overview of the recorded medical diagnosis groups.
Total: n = 43,923
- Left obstructions: These include e.g. Coarctation of the aorta , Aortic valve stenosis and Hypoplastic left heart syndrome.
- Right obstructions: These include e.g. Tetralogy of Fallot and Pulmonary valve stenosis.
- Septal defects/vascular malformations: These include e.g. Atrial septal defect, Ventricular septal defect and Atrioventricular septal defects.
- Original anomalies of the great vessels: These include e.g. Transposition of the great arteries and Double inlet left ventricle.
- Other
As of August 2024
Distribution of registered patients by severity of the heart defect
The manifestations and occurrence of congenital heart defects vary strongly with respect to diagnosis, treatment and course of the disease. The disease severity of a heart defect can be determined when establishing the diagnosis previous to or immediately after birth - heart defects are distinguished into severe, moderate and mild ones. However, an exact classification requires taking into account factors such as medical treatment and course of the disease. Both factors can impact the severity of the underlying disease in certain diagnoses. Therefore, our long-term collection in accordance with Warnes is based on including the particular treatment, as well as occurring secondary diseases, into the classification.
Children and teenagers (degrees of severity following Warnes):
- complex: these include heart defects that cannot be completely cured and require regular medical check-ups to detect any problems in good time. These include all heart defects where there is only one chamber of the heart, which are associated with pulmonary hypertension, or where patients have been given a conduit with or without a valve.
- moderate: these include heart defects which, although they have little impact on the patient's everyday life, require regular cardiological follow-up examinations (e.g. aortic isthmus stenosis).
- simple: these include heart defects that affect the patient so little that he or she rarely or never needs a cardiological examination (e.g. an atrial septal defect that was completely closed in childhood).
- not relevant
As of August 2024
Complexity, adults (degrees of severity following Warnes):
- complex: these include heart defects that cannot be completely cured and require regular medical check-ups to detect any problems in good time. These include all heart defects where there is only one chamber of the heart, which are associated with pulmonary hypertension, or where patients have been given a conduit with or without a valve.
- moderate: these include heart defects which, although they have little impact on the patient's everyday life, require regular cardiological follow-up examinations (e.g. aortic isthmus stenosis).
- simple: these include heart defects that affect the patient so little that he or she rarely or never needs a cardiological examination (e.g. an atrial septal defect that was completely closed in childhood).
- not relevant
As of August 2024
Your Contact Persons at the Competence Network
© Wolfram Scheible für Nationales Register
Dr. med. Ulrike Bauer
© Wolfram Scheible für Nationales Register
Dr. rer. medic. Paul Christian Helm
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