31.3.-2.4.2011

Business meeting of the KLR group for rare lung diseases at the GPP in Graz

4.-6.3.2010

Meeting of the group of rare pediatric lung diseases at the 32nd annual meeting of the Association of Pediatric Pneumology (GPP) in Berlin

4.3.2010

KLR foundation: General Meeting of members and symposium during the anual meeting of the GPP in Berlin

16.11.2009

Since 1993

Inaugural meeting and symposium of the Kids Lung Register foundation

On the 16th of November 2009 the inaugural meeting of the registered association Kids Lung Register (Kinderlungenregister e. V.) for improvement of patient care for children with orphan lung diseases was held. The goals of the kids lung register are the promotion and advancement of the pathophysiological basics, diagnostics, therapy, prophylaxis and epidemiology of all rare lung diseases in childhood and adolescent.

With the association as organising institution a register with biobank for the registration of orphan lung diseases in childhood and adolescent shall be established. The pediatric register is part of the competence network GOLD.net, which is sponsored by the Federal Ministry for Education and Research within the program for promotion of competence networks in medicine for a defined period of time. Concern of the network is to establish and perpetuate a German register with biobank for diffuse parenchymal lung diseases, as well as making the data available for research purposes.

Within the inaugural meeting a symposium about the current studies in the field of rare lung diseases in childhood and adolescent was held. In this context Dr. med. Nicolaus Schwerk from the Medical University Hannover presented first results of a retrospective long term study concerning the course of rare lung diseases in children. The results of the study are supposed to be published in 2011. Dr. med. Johannes Schulze from the Johann Wolfgang Goethe University Clinic reported on interstitial lung diseases in children with Louis-Bar-Syndrome. Because of the rarity of the disease there are no systematic studies on the diagnosis, therapy, prognosis and course in this patient group, like in most of the rare lung diseases. Goal of the Kids Lung Register is to meet the pressing needs of better patient care and research in this area.

The Kids Lung Register institutionalized a long standing investigation of rare children´s lung diseases. Since 1993 clinical cases treated at the Pediatric Pneumology Department of the Dr. von Haunersches Kinderspital or national and international referrals were systematically analyzed ("Balothek") and helped on clinically and scientifically. Initial projects and publications focussed on impairment of the pulmonary surfactant system in children from the interstitial lung disease spectrum.