Objective Children with diffuse lung disease, also called childhood interstitial lung diseases (chILD), may have one of more than 200 entities, the biggest group of respiratory orphan lung diseases. Frequently undiagnosed because of lack of awareness or complex differential diagnosis, they lead to much morbidity, mortality (about 15%) and psychosocial stress for the families. Current lack of evidence based guidelines reflects the absence of any real scientific evidence for management. All current therapeutic options are off label.We propose that leading European clinical scientists and paediatric pulmonologists collaborate to assemble cohorts in which children with well defined disease entities, verified by international panels of clinicians, radiologists, geneticists and pathologists are followed in a pan-European database and biobank compatible with others worldwide to allow common projects. Outcomes and treatment schemes will be rigorously defined and their value systematically assessed. We will put defined treatment protocols systematically into practice to allow their evaluation and perform a randomised controlled trial in line with the EU recommendations, to put prescribing for children on an evidence based footing. This will give evidence to use medicines available based on their objectively determined effects and side effects. The project will lead to accepted evidence-based and consensus-agreed diagnostic and management clinical guidelines, to a better care of patients afflicted by rare chILD and lead to improved quality of life for children with these incurable diseases. Fields of science social sciencessociologydemographymortalitynatural sciencescomputer and information sciencesdatabases Programme(s) FP7-HEALTH - Specific Programme "Cooperation": Health Topic(s) HEALTH.2012.2.4.4-2 - Observational trials in rare diseases Call for proposal FP7-HEALTH-2012-INNOVATION-1 See other projects for this call Funding Scheme CP-FP - Small or medium-scale focused research project Coordinator LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN EU contribution € 1 236 134,40 Address GESCHWISTER SCHOLL PLATZ 1 80539 Muenchen Germany See on map Region Bayern Oberbayern München, Kreisfreie Stadt Activity type Higher or Secondary Education Establishments Administrative Contact Petra Slamova (Mrs.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data Participants (9) Sort alphabetically Sort by EU Contribution Expand all Collapse all THE UNIVERSITY OF EDINBURGH United Kingdom EU contribution € 270 076,80 Address OLD COLLEGE, SOUTH BRIDGE EH8 9YL Edinburgh See on map Region Scotland Eastern Scotland Edinburgh Activity type Higher or Secondary Education Establishments Administrative Contact Fiona Edler (Ms.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data ROYAL BROMPTON AND HAREFIELD NATIONAL HEALTH SERVICE TRUST United Kingdom EU contribution € 127 285,20 Address SYDNEY STREET SW3 6NP LONDON See on map Region London Inner London — West Kensington & Chelsea and Hammersmith & Fulham Activity type Higher or Secondary Education Establishments Administrative Contact Andrew Bush (Prof.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data UNIVERSITE PIERRE ET MARIE CURIE - PARIS 6 France EU contribution € 249 200,40 Address Place Jussieu 4 75252 PARIS See on map Activity type Higher or Secondary Education Establishments Administrative Contact Thomas Wiest (Mr.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data HACETTEPE UNIVERSITESI Türkiye EU contribution € 133 780,80 Address HACETTEPE UNIVERSITESI BEYTEPE KAMPUSU REKTORLUK BINASI 06800 Cankaya Ankara See on map Region Batı Anadolu Ankara Ankara Activity type Higher or Secondary Education Establishments Administrative Contact Nural Kiper (Prof.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data MEDIZINISCHE HOCHSCHULE HANNOVER Germany EU contribution € 145 138,80 Address Carl-Neuberg-Strasse 1 30625 Hannover See on map Region Niedersachsen Hannover Region Hannover Activity type Higher or Secondary Education Establishments Administrative Contact Nicolaus Schwerk (Dr.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data UNIVERSITAET ULM Germany EU contribution € 148 200,00 Address HELMHOLTZSTRASSE 16 89081 Ulm See on map Region Baden-Württemberg Tübingen Ulm, Stadtkreis Activity type Higher or Secondary Education Establishments Administrative Contact Frank Gleixner (Mr.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data UNIVERSITA DEGLI STUDI DI PADOVA Italy EU contribution € 144 033,60 Address VIA 8 FEBBRAIO 2 35122 Padova See on map Region Nord-Est Veneto Padova Activity type Higher or Secondary Education Establishments Administrative Contact Laurenza Ballotta (Ms.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data UNIVERSITAETSMEDIZIN DER JOHANNES GUTENBERG-UNIVERSITAET MAINZ Germany EU contribution € 321 600,00 Address Langenbeckstrasse 1 55131 Mainz See on map Region Rheinland-Pfalz Rheinhessen-Pfalz Mainz, Kreisfreie Stadt Activity type Higher or Secondary Education Establishments Administrative Contact Uta Veith (Dr.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data PHILIPPS UNIVERSITAET MARBURG Germany EU contribution € 224 550,00 Address BIEGENSTRASSE 10 35037 Marburg See on map Region Hessen Gießen Marburg-Biedenkopf Activity type Higher or Secondary Education Establishments Administrative Contact Gisela Antony (Mrs.) Links Contact the organisation Opens in new window Website Opens in new window Total cost No data
