BESTCILIA

Better Experimental Screening and Treatment for Primary Ciliary Dyskinesia

 Coordinatore WESTFAELISCHE WILHELMS-UNIVERSITAET MUENSTER 

 Organization address address: SCHLOSSPLATZ 2
city: MUENSTER
postcode: 48149

contact info
Titolo: Mr.
Nome: Ingo
Cognome: Niendorf
Email: send email
Telefono: +49 251 8355881
Fax: +49 251 8358738

 Nazionalità Coordinatore Germany [DE]
 Totale costo 3˙850˙875 €
 EC contributo 2˙993˙674 €
 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   -   2015-11-30

 Partecipanti

# participant  country  role  EC contrib. [€] 
1    WESTFAELISCHE WILHELMS-UNIVERSITAET MUENSTER

 Organization address address: SCHLOSSPLATZ 2
city: MUENSTER
postcode: 48149

contact info
Titolo: Mr.
Nome: Ingo
Cognome: Niendorf
Email: send email
Telefono: +49 251 8355881
Fax: +49 251 8358738

DE (MUENSTER) coordinator 563˙718.00
2    REGION HOVEDSTADEN

 Organization address address: KONGENS VAENGE 2
city: HILLEROD
postcode: 3400

contact info
Titolo: Mr.
Nome: Klaus
Cognome: Tofting
Email: send email
Telefono: +45 35455282
Fax: +45 35455206

DK (HILLEROD) participant 463˙950.80
3    UNIVERSITAET BERN

 Organization address address: Hochschulstrasse 4
city: BERN
postcode: 3012

contact info
Titolo: Prof.
Nome: Claudia
Cognome: Kuehni
Email: send email
Telefono: +41 31 631 3507
Fax: +41 31 631 3520

CH (BERN) participant 393˙598.00
4    INTERNATIONAL INSTITUTE OF MOLECULAR AND CELL BIOLOGY

 Organization address address: ks. Trojdena 4
city: Warsaw
postcode: 02-109

contact info
Titolo: Prof.
Nome: Michal
Cognome: Witt
Email: send email
Telefono: +48 22 5970700
Fax: +48 22 5970715

PL (Warsaw) participant 261˙080.00
5    CYPRUS UNIVERSITY OF TECHNOLOGY

 Organization address address: ARCHBISHOP KYPRIANOS LIMASSOL SAVINGS CO OPERATIVE BANK BUILDING 3RD FLOOR 31
city: LIMASSOL
postcode: 3036

contact info
Titolo: Dr.
Nome: Charalambos
Cognome: Yiallouros
Email: send email
Telefono: +357 25002562
Fax: +357 25002763

CY (LIMASSOL) participant 259˙720.00
6    NATIONAL AND KAPODISTRIAN UNIVERSITY OF ATHENS

 Organization address address: CHRISTOU LADA 6
city: ATHENS
postcode: 10561

contact info
Titolo: Ms.
Nome: Efi
Cognome: Kafentzi
Email: send email
Telefono: +30 210 3689038
Fax: +30 2103689008

EL (ATHENS) participant 222˙934.80
7    THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL

 Organization address address: AIRPORT DRIVE 104 SUITE 2200 CB #1350
city: CHAPEL HILL
postcode: 27599

contact info
Titolo: Mrs.
Nome: Vanessa
Cognome: Peoples
Email: send email
Telefono: +1 919 9663411
Fax: +1 919 9623352

US (CHAPEL HILL) participant 213˙793.00
8    UNIVERSITY OF SOUTHAMPTON

 Organization address address: Highfield
city: SOUTHAMPTON
postcode: SO17 1BJ

contact info
Titolo: Ms.
Nome: Yan
Cognome: Qiao
Email: send email
Telefono: +44 23 8059 3907
Fax: +44 23 8059 2195

UK (SOUTHAMPTON) participant 193˙683.00
9    STICHTING VU-VUMC

 Organization address address: DE BOELELAAN 1105
city: AMSTERDAM
postcode: 1081 HV

contact info
Titolo: Dr.
Nome: Eric
Cognome: Haarman
Email: send email
Telefono: +31 20 444 5350

NL (AMSTERDAM) participant 113˙053.00
10    UNIVERSITY OF MIAMI

 Organization address address: ASHE BUILDING 240
city: CORAL GABLES MIAMI
postcode: 33124

contact info
Titolo: Mrs.
Nome: Maria
Cognome: Ortiz
Email: send email
Telefono: +1 305 284 2375
Fax: +1 305 284 2032

US (CORAL GABLES MIAMI) participant 108˙040.00
11    EUROPEAN RESEARCH SERVICES GMBH

 Organization address address: ROENTGENSTRASSE 19
city: MUENSTER
postcode: 48149

contact info
Titolo: Mr.
Nome: Oliver
Cognome: Panzer
Email: send email
Telefono: +49 251 833 0340
Fax: +49 251 833 0344

DE (MUENSTER) participant 100˙284.00
12    ROYAL BROMPTON AND HAREFIELD NATIONAL HEALTH SERVICE TRUST

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

contact info
Titolo: Mr.
Nome: Damian
Cognome: O Brien
Email: send email
Telefono: +44 2 073528121

UK (LONDON) participant 99˙820.00

Mappa


 Word cloud

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

treatment    evidence    cilia    chronic    ciliary    pcd    diagnostic    respiratory    introduction    therapy    diagnosis    trials    dyskinesia    rare    guidelines    primary    observational    burden    disease    members    patients    tool    lung   

 Obiettivo del progetto (Objective)

'Primary Ciliary Dyskinesia (PCD) is a rare genetically heterogeneous disorder which results from dysfunction of motile hair-like organelles (cilia) that results in severe, chronic airways disease. Due to other cilia-related disease mechanisms several other organ systems like the heart can be affected. The complexity of the disease phenotype, late diagnosis, as well as lack of evidence based management guidelines contribute to a high burden of disease and cause high health care costs. Therefore, there is a great need for observational trials as well as well-designed randomised controlled trials to put evidence-based diagnostic and treatment approaches into effect. The main objective of our project is to improve diagnosis and treatment of PCD patients. To accomplish this, we propose to: 1) Establish widespread, early diagnosis by introduction of nasal Nitric Oxide measurement as screening tool, and by introduction of high-speed videomicroscopy as diagnostic tool; 2) Develop new outcome criteria, especially a PCD-specific quality of life questionnaire, as a prerequisite for controlled PCD trials; 3) Establish a PCD registry for both cross-sectional analysis of current disease status and longitudinal observational analysis of disease progression under different regimens; 4) Generate evidence-based treatment guidelines by conducting two prospective randomized trials on the inhalation of hypertonic saline and long term azithromycin therapy. To achieve these goals members of the European Respiratory Society’s PCD task force will join forces with members of the NIH-funded US-PCD-network. In our multi-national project, we will for the first time establish evidence-based guidelines for diagnosis, clinical management and therapy. We expect that in a high proportion of children the diagnosis will be established before irreversible lung damage has occurred. In later diagnosed individuals the disease burden will be reduced and chronic respiratory failure retarded.'

Introduzione (Teaser)

Primary ciliary dyskinesia (PCD) is a rare inherited condition with symptoms including chronic lung disease, rhinosinusitis, hearing impairment and subfertility. Diagnosis is usually delayed or missed resulting in poor outcomes for such patients.

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