Compared to the common chronic lung diseases in childhood, e. g. asthma, there are numerous single cases of rare or extremely rare lung diseases, which are to be distinguished from other children with similar symptoms. Often those children are not appropriately diagnosed and they are treated broadly scattered in private practices, outpatient clinics and hospitals independently of each other. The multifaceted experiences from the physicians, as well as the relatives and the patients, who often have been through a real odyssey, show that those patients do not receive the optimal care.

Therefore, there is a pressing need for a central registration, consultation and where necessary a specialized diagnostics service for rare lung diseases in childhood and adolescent, while at the same time local diagnostics and therapy.

The well definable group of rare chronic lung disease contains over 100 different lung diseases. Those diseases cover a wide range of children of all ages - form the newborn to the adolescent - and affect the airways, the lung tissue, the breathing regulation and the lung vessels. For many of those rare diseases there are no diagnoses or catchy names, which additionally aggravate the correct diagnostic classification. By central registration of the whole group of rare diseases, by supporting the diagnostic process, as well as by reviewing and completing existing classifications the chILD-EU Register helps to solve the dilemma.

A central registration of the diverse diseases will for the first time allow an exact documentation of the status quo, an identification of the heterogeneous courses and the applied forms of treatment. This will permit reliable results concerning process and structural quality and with the help of longitudinal studies also evidence concerning performance quality.