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Ann Rheum Dis. 2012 Aug;71(8):1355-60. doi: 10.1136/annrheumdis-2011-200742. Epub 2012 May 21.

Update on the profile of the EUSTAR cohort: an analysis of the EULAR Scleroderma Trials and Research group database.

Collaborators (248)

Matucci-Cerinic M, Guiducci S, Tyndall A, Lapadula G, Iannone F, Becvar R, Sierakowsky S, Kowal-Bielecka O, Cutolo M, Sulli A, Rednic S, Nicoara I, Pamfil C, Kahan A, Avouac J, Vlachoyiannopoulos P, Montecucco C, Caporali R, Štork J, Inanc M, Carreira PE, Novak S, Varju C, Chizzolini C, Kucharz EJ, Kotulska A, Kopec-Medrek M, Widuchowska M, Cozzi F, Rozman B, Mallia C, Coleiro B, Gabrielli A, Farge-Bancel D, Marjanovic Z, Durant C, Airò P, Wollheim F, Hesselstrand R, Scheja A, Martinovic D, Radic M, Gurmann AB, Braun-Moscovici Y, Trotta F, La Corte R, Lo Monaco A, Hunzelmann N, Krieg T, Pellerito R, Bambara LM, Caramaschi P, Pieropan S, Morovic-Vergles J, Black C, Damjanov N, Kötter I, Ortiz Santamaria V, Heitmann S, Krasowska D, Seidel M, Hasler P, Burkhardt H, Himsel A, Bajocchi G, Da Silva JA, Henriques MJ, Stamenkovic B, Stankovic A, Marasini B, Belloli L, Tikly M, Nasanov EL, Denisov LN, Ananieva LP, Guseva NG, Nevskaja T, Tarner IH, Scorza R, Indiveri F, Engelhart M, Strauss G, Nielsen H, Damgaard K, Szekanecz Z, Szücs G, Szamosi S, de la Puente C, García de la Pena Lefebvre P, Midtvedt Ø, Garen T, Hachulla E, Launay D, Valesini G, Riccieri V, Ionescu RM, Opris D, Wigley FM, Stoica V, Mihai CM, Cornateanu RS, Udrea G, Ciurtin C, Ionitescu R, Bojinca M, Gherghe AM, Sunderkötter C, Kuhn A, Herrgott I, Saritas S, Sandorfi N, Schett G, Distler J, Beyer C, Meroni P, Zeni S, Guillevin L, Mouthon L, De Keyser F, Smith V, Cantatore FP, Corrado A, Ullman S, Iversen L, von Mühlen CA, Bohn JM, Lonzetti LS, Pozzi MR, Eyerich K, Hein R, Knott E, Szechinski J, Wiland P, Szmyrka-Kaczmarek M, Sokolik R, Morgiel E, Houssiau FA, Vanthuyne M, Román-Ivorra JA, Alegre-Sancho JJ, Krummel-Lorenz B, Aringer M, Meurer M, Westhovens R, De Langhe E, Anic B, Baresic M, Mayer M, Üprus M, Otsa K, Yavuz S, Granel B, Radominski SC, Müller Cde S, Azevedo VF, Jimenez S, Busquets J, Popa S, Agachi S, Groppa L, Chiaburu L, Russu E, Zenone T, Pileckyte M, Stebbings S, Highton J, Mathieu A, Vacca A, Sampaio-Barros PD, Yoshinari NH, Marangoni RG, Martin P, Fuocco L, Stamp L, Chapman P, O'Donnell J, Solanki K, Doube A, Schollum JS, Veale D, O'Rourke M, Loyo E, Then J, Toloza S, Li M, Mohamed WA, Mohamed WH, Olas J, Salsano F, Pisarri S, Rosato E, Oksel F, Yargucu F, Tanaseanu CM, Popescu M, Dumitrascu A, Tiglea I, Foti R, Chirieac R, Ancuta C, Furst DE, Villiger P, Adler S, van Laar J, Wiesik-Szewczyk E, Olesinska M, Kayser C, C AL, Fathi N, García de la Peña Lefebvre P, Rodriguez Rubio S, Valero Exposito M, Carpentier P, Imbert B, Francès C, Senet P, Sibilia J, Chatelus E, Gottenberg JE, Chifflot H, Litinsky I, Senécal JL, Koenig M, Joyal F, Tamara G, Emery P, Buch M, Del Galdo F, Bissel LA, Venalis A, Butrimiene I, Venalis P, Rugiene R, Karpec D, Saketkoo LA, Espinoza LR, Kerzberg E, Montoya F, Cosentino V, Bianchi W, Carneiro S, Maretti GB, Bianchi DV, Castellví I, Vettori S, Cuomo G, Deuschler K, Becker M.

Author information

1
Department of Internal Medicine and Rheumatology, Justus-Liebig-University Gießen Kerckhoff-Klinik, Bad Nauheim, Germany.

Abstract

OBJECTIVES:

Systemic sclerosis (SSc) is a rare disease requiring multicentre collaboration to reveal comprehensive details of disease-related causes for morbidity and mortality.

METHODS:

The European League Against Rheumatism (EULAR) Scleroderma Trials and Research (EUSTAR) group initiated a database to prospectively gather key data of patients with SSc using a minimal essential dataset that was reorganised in 2008 introducing new items. Baseline visit data of patients who were registered between 2004 and 2011 were analysed using descriptive statistics.

RESULTS:

In June 2011, 7655 patients (2838 with diffuse cutaneous (dc) and 4481 with limited cutaneous (lc) SSc who fulfilled the American College of Rheumatology diagnostic criteria had been registered in 174 centres, mainly European. The most prominent hallmarks of disease were Raynaud's phenomenon (96.3%), antinuclear antibodies (93.4%) and a typical capillaroscopic pattern (90.9%). Scleroderma was more common on fingers and hands than on any other part of the skin. Proton pump inhibitors (65.2%), calcium channel blockers (52.7%), and corticosteroids (45.3%) were most often prescribed. Among the immunosuppressant agents, cyclophosphamide was used more often in dcSSc than in lcSSc.

CONCLUSIONS:

The EUSTAR database provides an abundance of information on the true clinical face of SSc that will be helpful in improving the classification of SSc and its subsets and for developing more specific therapeutic recommendations.

PMID:
22615460
DOI:
10.1136/annrheumdis-2011-200742
[Indexed for MEDLINE]

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