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To decipher the optimal management of systemic sclerosis

Objective

The current approach to diagnosis and management of the rare disease systemic sclerosis (SSc) is based on American College of Rheumatology criteria with low sensitivity and few validated recommendations for the therapy of the disease and its manifold organ manifestations. To overcome these shortcomings, the DeSScipher project will use the multinational, prospective and open EUSTAR (Scleroderma Trials and Research group of the European League Against Rheumatism) SSc cohort based on the established MEDSonline database which covers >30 data items and will evolve into a multimodular tool to answer step-by-step all immanent questions in a long-term setting according to the nature of the disease. The resulting progress will address functionally disabling manifestations affecting the hands (digital ulcers and arthritis), and compare the efficacy and safety of off-label drugs in the treatment of vital organ manifestations. Specifically, the DeSScipher project will evaluate (i) the utility of a combination of easy-to-perform clinical and laboratory investigations in combination with capillaroscopy for identifying SSc patients at risk for the development of digital ulcers at an early stage (ii) the prevention and treatment of digital ulcers and hand arthritis in order to improve long-term disability and quality of life, (iii) the efficacy of different immunosuppressive agents in attenuating or inhibiting pulmonary fibrosis, (iv) the optimal treatment options for reducing morbidity and mortality of pulmonary hypertension and severe heart disease in SSc. Based on the results of these observational trials, the DeSScipher project will develop evidence-based clinical guidelines for the future management of adult and juvenile SSc to be disseminated widely and rapidly to physicians and patients. Novel outcome measures will also be provided as a basis for future clinical trials.

Field of science

  • /medical and health sciences/clinical medicine/rheumatology
  • /social sciences/sociology/demography/mortality

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

JUSTUS-LIEBIG-UNIVERSITAET GIESSEN
Address
Ludwigstrasse 23
35390 Giessen
Germany
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 555 182,21
Administrative Contact
Christian Maarten Veldman (Dr.)

Participants (14)

NOVAMEN SAS

Participation ended

France
Address
Rue De La République 69
69002 Lyon
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Marie-Laure Muiras (Dr.)
UNIVERSITAT ZURICH
Switzerland
EU contribution
€ 550 206,80
Address
Ramistrasse 71
8006 Zürich
Activity type
Other
Administrative Contact
Oliver Distler (Dr.)
UNIVERSITE PARIS DESCARTES
France
EU contribution
€ 110 224
Address
Rue De L Ecole De Medecine 12
75270 Paris Cedex 06
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Adeline Lassaux (Dr.)
UNIVERSITA DEGLI STUDI DI FIRENZE
Italy
EU contribution
€ 104 440
Address
Piazza San Marco 4
50121 Florence
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Giacomo Laffi (Prof.)
UNIVERSITA DEGLI STUDI DELLA CAMPANIA LUIGI VANVITELLI
Italy
EU contribution
€ 185 840
Address
Viale Abramo Lincoln 5
81100 Caserta
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Gabriele Valentini (Prof.)
UNIVERSITAT BASEL
Switzerland
EU contribution
€ 170 919,49
Address
Petersplatz 1
4051 Basel
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Kurt Kamber (Mr.)
University College London
United Kingdom
EU contribution
€ 218 070,80
Address
Gower Street
WC1E 6BT London
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Gosia Kielbasa (Ms.)
CHARITE - UNIVERSITAETSMEDIZIN BERLIN
Germany
EU contribution
€ 502 795,30
Address
Chariteplatz 1
10117 Berlin
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Eveline Fräßdorf (Ms.)
PECSI TUDOMANYEGYETEM - UNIVERSITY OF PECS
Hungary
EU contribution
€ 152 520
Address
Vasvari Pal Utca 4
7622 Pecs
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Józsefné Krutki (Dr.)
UNIVERSITY OF LEEDS
United Kingdom
EU contribution
€ 168 998
Address
Woodhouse Lane
LS2 9JT Leeds
Activity type
Higher or Secondary Education Establishments
Administrative Contact
Martin Hamilton (Mr.)
NEW-WIN AG
Switzerland
EU contribution
€ 121 500
Address
Tramstrasse 7
5034 Suhr
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Beat Fankhauser (Mr.)
FEDERATION OF EUROPEAN SCLERODERMA ASSOCIATIONS AISBL
Belgium
EU contribution
€ 36 978,40
Address
Le Versailles, Avenue Des Etats-unis 20, Boite 32
7500 Tournai
Activity type
Other
Administrative Contact
Beata Garay-Toth (Ms.)
IVAN FOELDVARI
Germany
EU contribution
€ 32 240
Address
Lange Reihe 83
20099 Hamburg
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Ivan Foeldvari (Dr.)
ACIES Consulting Group SAS
France
EU contribution
€ 89 920
Address
Rue De La République 69
69002 Lyon
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Administrative Contact
Elise Castan (Mrs.)