Rare lung diseases in register and biobank (KLR)
Therefore the complete spectrum of differential diagnoses is often not known to many attending physicians. Thus, it can easily come to a delay of therapy initiation, referral to specialist centers and in succession to avoidable complications.
Consequently there is an urgent need for improvement of the clinical care and especially of the research in the field of rare pediatric lung disease in childhood and adolescent.
This can be achieved through an open, however appropriately secured, central registration and consultation service. With the establishment of the Kids Lung Register and Biobank all requirements are fulfilled for the achieving this objective.
The aim of the Kids Lung Register is to provide all possible help for any "local doctor" and in cooperation with the relevant medical associations, like the association for pediatric pneumology, the association for neonatology and pediatric intensive care medicine, to follow the long term course of all rare pediatric lung diseases, to optimize their diagnostics and therapy and to initiate quality assurance.