KLR e.V.

The competence network GOLD.net is sponsored with a programm by the federal ministry for education and research for promoting competence networks in medicine for a defined period of time. The aim of the network is the establishment and perpetuation of an international register with biobank for diffuse interstitial lung diseases, as well as making the data available for research. For the part of the lung diseases in childhood this is realized through the Kids Lung Register with Biobank under the organizing institution of the registered association Kinderlungenregister e. V.  The aim of the association are the promotion and improvement of the pathophysiological basis, diagnostics, therapy, prophylaxis and epidemiology of all rare disease involving the lung in childhood and adolescent. For this all necessary structures and standards will be established, kept at hand and improved.

The aim of the association is the improvement of the medical care of patients with rare diseases of the lung and the continuing improvement. Therefore the following objectives within the Kids Lung Register shall be realized:

1. The creation of conditions for an efficient and high quality  standard research of the diagnostic and therapeutic care of children with lung diseases through a central registration within the Kids Lung Register and making the data available for  scientific research.

2. The KLR e. V. advocates the improvement of diagnostics, therapy, epidemiology and prophylaxis of  lung diseases in children. It  is devoted to promotion, research and distribution of new results within the Kids Lung Register. This will be done in diagnostic conferences, anualmeetings of the work group during the anual  congress of  the German Association for Pediatric Pneumology (GPP), by initiation and organisation of clinical studies, by conducting clinical studies, by performing translational research projects concerning the mechanisms of rare lung diseases and by conducting epidemiological and genetic studies. Besides that the KLR e. V. actively supervises the distribution and application of the achieved results. 

3. The KLR e. V. secures abiding of the data safety concept.

4. The KLR e. V. co-operates with the German Society for Pediatric Pneumology (GPP), the German Society for Neonatology and Pediatric Intensive Care Medicine and the German speaking societies for pediatrics.

5. On international basis the KLR e. V.  co-operates with the national pediatric registers and according organisations and institutions of other countries.
 

6. The KLR e. V. promotes the public relations work of the Kids Lung Register. It colllects donations and takes care of the charitable appropriation according to the purpose of the association.
 

7.  The KLR e. V. supports the competence network GOLD.net in the conceptual development  and in particular of the improvement of the Kids Lung Register and Biobank.

8. The KLR e. V. aspires a long-term securing of the objectives 1.-7. after a possible discontinuation of the actual sponsorship.