Research Basis of the National Register
Donated Data in the Register
Basic Data for Your Research
Over 55,000 patients, as well as their relatives, have enrolled in the register.
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.collapse
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.
Darstellung der Anzahl der im Register angemeldeten Patienten als Bilanz nach Wohnort bezogen auf 1 Million Einwohner der Bevölkerung des jeweiligen Bundeslandes. Stand: Dezember 2018
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.
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.
Following Warnes, we distinguish three degrees of severity: