• chILD-EU Register
      Login chILD-EU Register
        Consent Forms
          Register information
            Registration (once)
          • Send material and data of a patient
          • Service / SOPs
              Refer a patient for Periodic Case Discussion
                SOP / Checklists
                  Patient / parent section
                    Open Positions
                      Links
                    • History / Paper
                        History
                          Paper
                        • Current Projects
                        • Contact
                        1. chILD-EU 
                        2. History / Paper
                        3. History

                        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:

                        1. Investigation of the individual long term course of all rare lung diseases
                        2. Optimal diagnostic procedures and etiological classification of rare lung disease by harmonizing diagnostic algorithms, reference pathology and reference radiology
                        3. Evaluation and grading of the individual effectiveness of therapeutic interventions by observing and comparing long-term courses
                        4. Improved enrolment of patients into clinical studies, especially in international alliances
                        5. Epidemiologic coverage of incidence and prevalence of all rare chronic lung diseases in childhood and adolescence
                        6. 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.

                        Munich
                        Prof. Dr. med. Matthias Griese
                        EU-project coordinator, project leader: work packages 1, 6, 7 and 8
                        Dr. med. Meike Hengst
                        Scientific Officer
                        Claudia Eismann
                        Projectmanagement
                        Dörthe Neuner
                        Studycoordination Munich
                        Edinburgh
                        Prof. Steve Cunningham
                        project leader: work package 3
                        London
                        Prof. Andrew Bush
                        MD FRCP FRCPCH, project leader: work package 2
                        Prof. Andrew G Nicholson
                        Referenz Histopathologist
                        Paris
                        Prof. Annick Clement
                        project leader: work package 4
                        Prof. Ralph Epaud
                        Service de Pédiatrie
                        Prof. Jacques de BLIC
                        Service de Pneumologie et Allergologie
                        Ankara
                        Prof. Nural Kiper
                        Güzin Cinel
                        Hannover
                        Dr. med. Nicolaus Schwerk
                        project leader: work package 5
                        Dr. med. Martin Wetzke
                        Ulm
                        Prof. Lutz Goldbeck
                        Ph.D.
                        Astrid Fidika
                        Mandy Niemitz
                        Padova
                        Prof. Angelo Barbato
                        Dr. med. Deborah Snijders
                        pediatrician
                        Mainz
                        Dr. rer. nat. Kai Kronfeld
                        Marburg
                        Gisela Antony
                        Edda Sauer
                        Hans Rock

                        chILD-EU research consortium represented by Ludwig-Maximilians-University, Munich Pediatric Pneumology

                        Office: Frau A. Schams

                        Lindwurmstraße 2a
                        80337 München
                        +49 (0)89 4400 53715 + 49 (0)89 4400 57715
                        yzEVM_NCepixlcbipvimsful+vfiuyziu mi
                        Login for editors
                        Imprint | Data-Safety
                        chILD-EU

                        European Man...

                        • chILD-EU Register
                          • Login chILD-EU Register
                          • Consent Forms
                          • Register information
                          • Registration (once)
                        • Send material and data of a patient
                        • Service / SOPs
                          • Refer a patient for Periodic Case Discussion
                          • SOP / Checklists
                          • Patient / parent section
                          • Open Positions
                          • Links
                        • History / Paper
                          • History
                          • Paper
                        • Current Projects
                        • Contact