History
Rare childhood interstitial lung diseases comprise a group with a variety of diseases which are not well clinically characterized and which often lead to impaired gas exchange and induce proliferation of connective tissue in the lung. The incidence of these rare diseases in Europe is less than 0.5 to 1 cases in 100.000 in one year.
The children often present with persistent fast breathing, to the point of dyspnoea, deficient oxygen supply with blue lips and fingers and some of the children also have frequent infections of the lung.
Adequate diagnostics and therapy will be achieved in cooperation with the disease’s reference centers and should be organized with the help of the chILD-EU register.
Prof. Matthias Griese presented the chILD-EU project during the project's Kick Off Meeting in Munich which took place on January 18th and 19th 2013 at the Dr. von Hauner Children's Clinic. Click on image above to view video.
The chILD-EU project is currently comprised of 10 academic partners from 5 European countries.
Our goal is to determine the long term course of childhood interstitial lung diseases (chILD), optimize diagnosis as well as therapy, initiate quality assurance protocols and promote clinical and scientific progress.
Project Title:
Orphans Unite: chILD better together – European Management Platform for Childhood Interstitial Lung Disease
Project No:
FP7-305653-chILD-EU
Budget:
EURO 3,0 million
Coordinator:
Ludwig-Maximilians-University of Munich, Prof. Dr. med. M. Griese
Start/End:
December 2012 / November 2016
Duration:
42 months
Kids Lung Register Foundation
The objectives of the non-profit organization Kids Lung Register Foundation are the promotion of the research and improvement of the pathophysiological principles, diagnostics, therapy, prophylaxis and epidemiology of rare lung diseases in childhood and adolescence. Therefore, all necessary structures and standards are to be established, maintained and improved.
The Kids Lung Register Foundation is the long term basis for various projects run in its frame work.
Background / Mission
Background, current state of research and problems
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.
GOALS OF THE PROJECT
General goals
We have established a long-term register for rare lung diseases in childhood and adolescent. It is affiliated to the relevant scientific associations and support organisations. This Register and Biobank permits:
- Investigation of the individual long term course of all rare lung diseases
- Optimal diagnostic procedures and etiological classification of rare lung disease by harmonizing diagnostic algorithms, reference pathology and reference radiology
- Evaluation and grading of the individual effectiveness of therapeutic interventions by observing and comparing long-term courses
- Improved enrolment of patients into clinical studies, especially in international alliances
- Epidemiologic coverage of incidence and prevalence of all rare chronic lung diseases in childhood and adolescence
- Quality assurance by evaluation of structure, process and result quality
Only the usage of these now established structures will permit significant improvement in the giant and up to now neglected sector of rare chronic lung diseases in childhood and adolescent.
Consortium
Orphans Unite: chILD better together
European Management Platform for Childhood Interstitial Lung Disease
Project Title:
Orphans Unite: chILD better together – European Management Platform for Childhood Interstitial Lung Disease
Project No:
FP7-305653-chILD-EU
Budget:
EURO 3,0 million
Coordinator:
Ludwig-Maximilians-University Munich, Prof. Dr. med. Matthias Griese
Begin:
December 2012
Duration:
42 months
Currently there are 10 academic partners in the network project chILD-EU, funded by the European Commission in the frame of FP 7.