CHILD-EU

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

 Coordinatore LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN 

 Organization address address: GESCHWISTER SCHOLL PLATZ 1
city: MUENCHEN
postcode: 80539

contact info
Titolo: Mrs.
Nome: Petra
Cognome: Erhart
Email: send email
Telefono: +49 89 5160 8341

 Nazionalità Coordinatore Germany [DE]
 Totale costo 3˙854˙000 €
 EC contributo 3˙000˙000 €
 Programma FP7-HEALTH
Specific Programme "Cooperation": Health
 Code Call FP7-HEALTH-2012-INNOVATION-1
 Funding Scheme CP-FP
 Anno di inizio 2012
 Periodo (anno-mese-giorno) 2012-12-01   -   2016-05-31

 Partecipanti

# participant  country  role  EC contrib. [€] 
1    LUDWIG-MAXIMILIANS-UNIVERSITAET MUENCHEN

 Organization address address: GESCHWISTER SCHOLL PLATZ 1
city: MUENCHEN
postcode: 80539

contact info
Titolo: Mrs.
Nome: Petra
Cognome: Erhart
Email: send email
Telefono: +49 89 5160 8341

DE (MUENCHEN) coordinator 1˙099˙650.00
2    UNIVERSITATSMEDIZIN DER JOHANNES GUTENBERG-UNIVERSITAT MAINZ

 Organization address address: Langenbeckstrasse 1
city: Mainz
postcode: 55131

contact info
Titolo: Dr.
Nome: Uta
Cognome: Veith
Email: send email
Telefono: +49 6131 179717
Fax: +49 6131 179669

DE (Mainz) participant 321˙600.00
3    THE UNIVERSITY OF EDINBURGH

 Organization address address: OLD COLLEGE, SOUTH BRIDGE
city: EDINBURGH
postcode: EH8 9YL

contact info
Titolo: Ms.
Nome: Fiona
Cognome: Edler
Email: send email
Telefono: +44 131 242 9420
Fax: +44 131 242 7778

UK (EDINBURGH) participant 303˙000.00
4    UNIVERSITE PIERRE ET MARIE CURIE - PARIS 6

 Organization address address: Place Jussieu 4
city: PARIS
postcode: 75252

contact info
Titolo: Mr.
Nome: Thomas
Cognome: Wiest
Email: send email
Telefono: +33 1 44 279758
Fax: +33 1 44 277467

FR (PARIS) participant 291˙000.00
5    PHILIPPS UNIVERSITAET MARBURG

 Organization address address: Biegenstrasse 10
city: MARBURG
postcode: 35032

contact info
Titolo: Mrs.
Nome: Gisela
Cognome: Antony
Email: send email
Telefono: +49 6421 5865440
Fax: +49 6421 5865308

DE (MARBURG) participant 224˙550.00
6    MEDIZINISCHE HOCHSCHULE HANNOVER

 Organization address address: Carl-Neuberg-Strasse 1
city: HANNOVER
postcode: 30625

contact info
Titolo: Dr.
Nome: Nicolaus
Cognome: Schwerk
Email: send email
Telefono: 49511500000000

DE (HANNOVER) participant 171˙000.00
7    HACETTEPE UNIVERSITESI

 Organization address address: HACETTEPE UNIVERSITESI BEYTEPE KAMPUSU REKTORLUK BINASI
city: CANKAYA ANKARA
postcode: 6800

contact info
Titolo: Prof.
Nome: Nural
Cognome: Kiper
Email: send email
Telefono: +90 312 305 12 24

TR (CANKAYA ANKARA) participant 153˙000.00
8    UNIVERSITA DEGLI STUDI DI PADOVA

 Organization address address: VIA 8 FEBBRAIO 2
city: PADOVA
postcode: 35122

contact info
Titolo: Ms.
Nome: Laurenza
Cognome: Ballotta
Email: send email
Telefono: +39 049 8211875
Fax: +39 049 8211877

IT (PADOVA) participant 153˙000.00
9    UNIVERSITAET ULM

 Organization address address: HELMHOLTZSTRASSE 16
city: ULM
postcode: 89081

contact info
Titolo: Mr.
Nome: Frank
Cognome: Gleixner
Email: send email
Telefono: +49 7310 50066397

DE (ULM) participant 148˙200.00
10    ROYAL BROMPTON AND HAREFIELD NATIONAL HEALTH SERVICE TRUST

 Organization address address: SYDNEY STREET
city: LONDON
postcode: SW3 6NP

contact info
Titolo: Prof.
Nome: Andrew
Cognome: Bush
Email: send email
Telefono: +4420 7351 8232

UK (LONDON) participant 135˙000.00

Mappa


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

interstitial    pan    diagnosis    biomaterial    biobank    obtaining    childhood    faster    difficult    randomised    patients    drugs    children    protocols    systematically    put    rare    trials    entities    diagnostic    off    disease    families    database    evidence    guidelines    treatment    lung    clinical    standardised    lack    label    group    international    child    quality    symptoms    life    aid    diseases    patient    data    approvals   

 Obiettivo del progetto (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.'

Introduzione (Teaser)

Childhood interstitial lung disease (chILD) refers to a group of over 100 rare lung diseases that affect babies, children and teenagers. Symptoms include chronic cough, shortness of breath and rapid breathing.

Descrizione progetto (Article)

Annually, in Europe, there are one or so cases of CHILD for every 100 000. Such patients often have an indeterminate, sometimes poor, prognosis and quality of life.

Diagnosis is difficult as chILD is rare and complex with no currently approved cures in existence. Besides lack of standardised diagnostic criteria, treatment requires use of off-label drugs as meeting the requirements for conducting clinical trials is too difficult for such rare diseases.

Through a pan-European network, the EU-funded http://www.childeu.net (CHILD-EU) project will conduct randomised clinical trials for chILD and implement a standardised patient database and biobank. Their goal is to fill the gaps in knowledge and develop evidence-based guidelines for faster diagnosis and effective clinical management of chILD.

CHILD-EU members successfully established a web-based database and biobank system. chILD cases can be registered and their data anonymised to ensure long-term monitoring as well as biomaterial and data availability. Researchers also harmonised biomaterial handling and storage procedures at the international level. These protocols and a Best Practice Checklist for diagnosis are currently available on the project website.

Patient data entry began in March 2014 and over 300 cases from different sites are already included in the database. Most importantly, key parameters for outcome follow-up were selected for the forthcoming observational trials on chILD cases. Upon obtaining the requisite approvals, researchers will assess the efficacy of hydroxychloroquine and oral systemic steroid treatment in alleviating chILD symptoms.

At the end of the CHILD-EU project, data obtained from well-characterised chILD patients should provide insight into the aetiology of these diseases. This should aid in optimising protocols for faster diagnosis and effective treatment of such patients. Such evidence-based guidelines should also aid in obtaining approvals for currently off-label drugs. Ultimately, this should improve the quality of life of chILD patients as well as their families.

Altri progetti dello stesso programma (FP7-HEALTH)

FOD-CC (2010)

FRAILTY OPERATIVE DEFINITION-CONSENSUS CONFERENCE

Read More  

TOLERAGE (2008)

Normalisation of immune reactivity in old age – from basic mechanisms to clinical application

Read More  

PROHEARING (2012)

A novel micronutrient-based strategy to prevent hearing impairments: test and road to market for age-related hearing loss and preservation of residual hearing

Read More