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Orphans Unite: chILD better together –
European Management Platform for Childhood Interstitial Lung Diseases

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.

Call for proposal

FP7-HEALTH-2012-INNOVATION-1
See other projects for this call

Coordinator

LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN
Address
Geschwister Scholl Platz 1
80539 Muenchen
Germany
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 1 236 134,40
Administrative Contact
Petra Slamova (Mrs.)

Participants (9)

THE UNIVERSITY OF EDINBURGH
United Kingdom
EU contribution
€ 270 076,80
Address
Old College, South Bridge
EH8 9YL Edinburgh
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Fiona Edler (Ms.)
Royal Brompton & Harefield NHS Foundation Trust
United Kingdom
EU contribution
€ 127 285,20
Address
Sydney Street
Sw3 6NP South Kensington
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Andrew Bush (Prof.)
UNIVERSITE PIERRE ET MARIE CURIE - PARIS 6
France
EU contribution
€ 249 200,40
Address
Place Jussieu 4
75252 Paris
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Thomas Wiest (Mr.)
HACETTEPE UNIVERSITESI
Turkey
EU contribution
€ 133 780,80
Address
Hacettepe Universitesi Beytepe Kampusu Rektorluk Binasi
06800 Cankaya Ankara
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Nural Kiper (Prof.)
MEDIZINISCHE HOCHSCHULE HANNOVER
Germany
EU contribution
€ 145 138,80
Address
Carl-neuberg-strasse 1
30625 Hannover
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Nicolaus Schwerk (Dr.)
UNIVERSITAET ULM
Germany
EU contribution
€ 148 200
Address
Helmholtzstrasse 16
89081 Ulm
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Frank Gleixner (Mr.)
UNIVERSITA DEGLI STUDI DI PADOVA
Italy
EU contribution
€ 144 033,60
Address
Via 8 Febbraio 2
35122 Padova
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Laurenza Ballotta (Ms.)
UNIVERSITAETSMEDIZIN DER JOHANNES GUTENBERG-UNIVERSITAET MAINZ
Germany
EU contribution
€ 321 600
Address
Langenbeckstrasse 1
55131 Mainz
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Uta Veith (Dr.)
PHILIPPS UNIVERSITAET MARBURG
Germany
EU contribution
€ 224 550
Address
Biegenstrasse 10
35037 Marburg
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Gisela Antony (Mrs.)