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  1. Allanore, Y, Bozzi, S, Terlinden, A, Huscher, D, Amand, C, Soubrane, C et al.. Health Assessment Questionnaire-Disability Index (HAQ-DI) use in modelling disease progression in diffuse cutaneous systemic sclerosis: an analysis from the EUSTAR database. Arthritis Res Ther. 2020;22 (1):257. doi: 10.1186/s13075-020-02329-2. PubMed PMID:33115544 PubMed Central PMC7592571.
  2. Benvenuti, F, Zanatta, E, Avouac, J, Müller-Ladner, U, Cozzi, F, Hoffmann-Vold, AM et al.. The power of the EUSTAR cohort: key findings to date and implications for management of systemic sclerosis patients. Expert Rev Clin Immunol. 2020; :1-10. doi: 10.1080/1744666X.2021.1836962. PubMed PMID:33076716 .
  3. Hoffmann-Vold, AM, Allanore, Y, Alves, M, Brunborg, C, Airó, P, Ananieva, LP et al.. Progressive interstitial lung disease in patients with systemic sclerosis-associated interstitial lung disease in the EUSTAR database. Ann Rheum Dis. 2020; :. doi: 10.1136/annrheumdis-2020-217455. PubMed PMID:32988845 .
  4. Ross, L, Stevens, W, Wilson, M, Huq, M, Strickland, G, Walker, J et al.. Performance of the 2017 EUSTAR activity index in an scleroderma cohort. Clin Rheumatol. 2020;39 (12):3701-3705. doi: 10.1007/s10067-020-05126-z. PubMed PMID:32696281 .
  5. Pignataro, F, Maglione, W, Minniti, A, Sambataro, D, Sambataro, G, Campanaro, F et al.. NEMO score in nailfold videocapillaroscopy is a good tool to assess both steady state levels and overtime changes of disease activity in patients with systemic sclerosis: a comparison with the proposed composite indices for this disease status entity. Arthritis Res Ther. 2019;21 (1):258. doi: 10.1186/s13075-019-2032-6. PubMed PMID:31783890 PubMed Central PMC6884889.
  6. Jaeger, VK, Tikly, M, Xu, D, Siegert, E, Hachulla, E, Airò, P et al.. Racial differences in systemic sclerosis disease presentation: a European Scleroderma Trials and Research group study. Rheumatology (Oxford). 2020;59 (7):1684-1694. doi: 10.1093/rheumatology/kez486. PubMed PMID:31680161 .
  7. Smith, V, Vanhaecke, A, Herrick, AL, Distler, O, Guerra, MG, Denton, CP et al.. Fast track algorithm: How to differentiate a "scleroderma pattern" from a "non-scleroderma pattern". Autoimmun Rev. 2019;18 (11):102394. doi: 10.1016/j.autrev.2019.102394. PubMed PMID:31520797 .
  8. Fasano, S, Riccardi, A, Messiniti, V, Caramaschi, P, Rosato, E, Maurer, B et al.. Revised European Scleroderma Trials and Research Group Activity Index is the best predictor of short-term severity accrual. Ann Rheum Dis. 2019;78 (12):1681-1685. doi: 10.1136/annrheumdis-2019-215787. PubMed PMID:31422354 .
  9. Yayla, ME, İlgen, U, Okatan, İE, UsluYurteri, E, Torgutalp, M, Keleşoğlu Dinçer, AB et al.. Association of simple hematological parameters with disease manifestations, activity, and severity in patients with systemic sclerosis. Clin Rheumatol. 2020;39 (1):77-83. doi: 10.1007/s10067-019-04685-0. PubMed PMID:31317426 .
  10. Becker, M, Graf, N, Sauter, R, Allanore, Y, Curram, J, Denton, CP et al.. Predictors of disease worsening defined by progression of organ damage in diffuse systemic sclerosis: a European Scleroderma Trials and Research (EUSTAR) analysis. Ann Rheum Dis. 2019;78 (9):1242-1248. doi: 10.1136/annrheumdis-2019-215145. PubMed PMID:31227488 PubMed Central PMC6788922.
  11. de Vries-Bouwstra, JK, Allanore, Y, Matucci-Cerinic, M, Balbir-Gurman, A. Worldwide Expert Agreement on Updated Recommendations for the Treatment of Systemic Sclerosis. J Rheumatol. 2020;47 (2):249-254. doi: 10.3899/jrheum.181173. PubMed PMID:31043545 .
  12. Hoffmann-Vold, AM, Distler, O, Murray, B, Kowal-Bielecka, O, Khanna, D, Allanore, Y et al.. Setting the international standard for longitudinal follow-up of patients with systemic sclerosis: a Delphi-based expert consensus on core clinical features. RMD Open. 2019;5 (1):e000826. doi: 10.1136/rmdopen-2018-000826. PubMed PMID:30997150 PubMed Central PMC6446182.
  13. Sobanski, V, Giovannelli, J, Allanore, Y, Riemekasten, G, Airò, P, Vettori, S et al.. Phenotypes Determined by Cluster Analysis and Their Survival in the Prospective European Scleroderma Trials and Research Cohort of Patients With Systemic Sclerosis. Arthritis Rheumatol. 2019;71 (9):1553-1570. doi: 10.1002/art.40906. PubMed PMID:30969034 PubMed Central PMC6771590.
  14. Elhai, M, Boubaya, M, Distler, O, Smith, V, Matucci-Cerinic, M, Alegre Sancho, JJ et al.. Outcomes of patients with systemic sclerosis treated with rituximab in contemporary practice: a prospective cohort study. Ann Rheum Dis. 2019;78 (7):979-987. doi: 10.1136/annrheumdis-2018-214816. PubMed PMID:30967395 .
  15. Wu, W, Jordan, S, Graf, N, de Oliveira Pena, J, Curram, J, Allanore, Y et al.. Progressive skin fibrosis is associated with a decline in lung function and worse survival in patients with diffuse cutaneous systemic sclerosis in the European Scleroderma Trials and Research (EUSTAR) cohort. Ann Rheum Dis. 2019;78 (5):648-656. doi: 10.1136/annrheumdis-2018-213455. PubMed PMID:30852552 PubMed Central PMC6517861.
  16. Blagojevic, J, Bellando-Randone, S, Abignano, G, Avouac, J, Cometi, L, Czirják, L et al.. Classification, categorization and essential items for digital ulcer evaluation in systemic sclerosis: a DeSScipher/European Scleroderma Trials and Research group (EUSTAR) survey. Arthritis Res Ther. 2019;21 (1):35. doi: 10.1186/s13075-019-1822-1. PubMed PMID:30678703 PubMed Central PMC6346551.
  17. Vincent, FB, Lin, E, Sahhar, J, Ngian, GS, Kandane-Rathnayake, R, Mende, R et al.. Analysis of serum macrophage migration inhibitory factor and D-dopachrome tautomerase in systemic sclerosis. Clin Transl Immunology. 2018;7 (12):e1042. doi: 10.1002/cti2.1042. PubMed PMID:30546906 PubMed Central PMC6283235.
  18. Horimoto, AMC, Camargo, CZ, Kayser, C. Less severe disease in patients with early systemic sclerosis?. Mod Rheumatol. 2019;29 (6):977-983. doi: 10.1080/14397595.2018.1551265. PubMed PMID:30472907 .
  19. Park, JW, Ahn, GY, Kim, JW, Park, ES, Kang, JH, Chang, SH et al.. Impact of EUSTAR standardized training on accuracy of modified Rodnan skin score in patients with systemic sclerosis. Int J Rheum Dis. 2019;22 (1):96-102. doi: 10.1111/1756-185X.13433. PubMed PMID:30398033 .
  20. Hu, S, Hou, Y, Wang, Q, Li, M, Xu, D, Zeng, X et al.. Prognostic profile of systemic sclerosis: analysis of the clinical EUSTAR cohort in China. Arthritis Res Ther. 2018;20 (1):235. doi: 10.1186/s13075-018-1735-4. PubMed PMID:30348207 PubMed Central PMC6235213.
  21. Vidal, C, Ruano, C, Bernardino, V, Lavado Carreira, P, Lladó, A, Santos, MC et al.. Clinical Presentation and Long-Term Outcomes of Systemic Sclerosis Portuguese Patients from a Single Centre Cohort: A EUSTAR Registration Initiative. Acta Med Port. 2018;31 (6):312-320. doi: 10.20344/amp.10658. PubMed PMID:30020876 .
  22. Dougherty, DH, Kwakkenbos, L, Carrier, ME, Salazar, G, Assassi, S, Baron, M et al.. The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts. Rheumatology (Oxford). 2018;57 (9):1623-1631. doi: 10.1093/rheumatology/key139. PubMed PMID:29868924 .
  23. Jaeger, VK, Valentini, G, Hachulla, E, Cozzi, F, Distler, O, Airó, P et al.. Brief Report: Smoking in Systemic Sclerosis: A Longitudinal European Scleroderma Trials and Research Group Study. Arthritis Rheumatol. 2018;70 (11):1829-1834. doi: 10.1002/art.40557. PubMed PMID:29781588 .
  24. Morgan, ND, Shah, AA, Mayes, MD, Domsic, RT, Medsger, TA Jr, Steen, VD et al.. Clinical and serological features of systemic sclerosis in a multicenter African American cohort: Analysis of the genome research in African American scleroderma patients clinical database. Medicine (Baltimore). 2017;96 (51):e8980. doi: 10.1097/MD.0000000000008980. PubMed PMID:29390428 PubMed Central PMC5758130.
  25. Herrick, AL, Peytrignet, S, Lunt, M, Pan, X, Hesselstrand, R, Mouthon, L et al.. Patterns and predictors of skin score change in early diffuse systemic sclerosis from the European Scleroderma Observational Study. Ann Rheum Dis. 2018;77 (4):563-570. doi: 10.1136/annrheumdis-2017-211912. PubMed PMID:29306872 PubMed Central PMC5890636.
  26. Reiseter, S, Gunnarsson, R, Corander, J, Haydon, J, Lund, MB, Aaløkken, TM et al.. Disease evolution in mixed connective tissue disease: results from a long-term nationwide prospective cohort study. Arthritis Res Ther. 2017;19 (1):284. doi: 10.1186/s13075-017-1494-7. PubMed PMID:29268795 PubMed Central PMC5740892.
  27. Ingegnoli, F, Ughi, N, Dinsdale, G, Orenti, A, Boracchi, P, Allanore, Y et al.. An international SUrvey on non-iNvaSive tecHniques to assess the mIcrocirculation in patients with RayNaud's phEnomenon (SUNSHINE survey). Rheumatol Int. 2017;37 (11):1879-1890. doi: 10.1007/s00296-017-3808-0. PubMed PMID:28894946 .
  28. Elhai, M, Meune, C, Boubaya, M, Avouac, J, Hachulla, E, Balbir-Gurman, A et al.. Mapping and predicting mortality from systemic sclerosis. Ann Rheum Dis. 2017;76 (11):1897-1905. doi: 10.1136/annrheumdis-2017-211448. PubMed PMID:28835464 .
  29. Herrick, AL, Pan, X, Peytrignet, S, Lunt, M, Hesselstrand, R, Mouthon, L et al.. Treatment outcome in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study (ESOS). Ann Rheum Dis. 2017;76 (7):1207-1218. doi: 10.1136/annrheumdis-2016-210503. PubMed PMID:28188239 PubMed Central PMC5530354.
  30. Kowal-Bielecka, O, Chwiesko-Minarowska, S, Bernatowicz, PL, Allanore, Y, Radstake, T, Matucci-Cerinic, M et al.. The arachidonate 5-lipoxygenase activating protein gene polymorphism is associated with the risk of scleroderma-related interstitial lung disease: a multicentre European Scleroderma Trials and Research group (EUSTAR) study. Rheumatology (Oxford). 2017;56 (5):844-852. doi: 10.1093/rheumatology/kew499. PubMed PMID:28160477 .
  31. Lazzaroni, MG, Cavazzana, I, Colombo, E, Dobrota, R, Hernandez, J, Hesselstrand, R et al.. Malignancies in Patients with Anti-RNA Polymerase III Antibodies and Systemic Sclerosis: Analysis of the EULAR Scleroderma Trials and Research Cohort and Possible Recommendations for Screening. J Rheumatol. 2017;44 (5):639-647. doi: 10.3899/jrheum.160817. PubMed PMID:28089973 .
  32. Kowal-Bielecka, O, Fransen, J, Avouac, J, Becker, M, Kulak, A, Allanore, Y et al.. Update of EULAR recommendations for the treatment of systemic sclerosis. Ann Rheum Dis. 2017;76 (8):1327-1339. doi: 10.1136/annrheumdis-2016-209909. PubMed PMID:27941129 .
  33. Valentini, G, Iudici, M, Walker, UA, Jaeger, VK, Baron, M, Carreira, P et al.. The European Scleroderma Trials and Research group (EUSTAR) task force for the development of revised activity criteria for systemic sclerosis: derivation and validation of a preliminarily revised EUSTAR activity index. Ann Rheum Dis. 2017;76 (1):270-276. doi: 10.1136/annrheumdis-2016-209768. PubMed PMID:27621285 .
  34. Frantz, C, Avouac, J, Distler, O, Amrouche, F, Godard, D, Kennedy, AT et al.. Impaired quality of life in systemic sclerosis and patient perception of the disease: A large international survey. Semin Arthritis Rheum. 2016;46 (1):115-23. doi: 10.1016/j.semarthrit.2016.02.005. PubMed PMID:27132536 .
  35. Dobrota, R, Maurer, B, Graf, N, Jordan, S, Mihai, C, Kowal-Bielecka, O et al.. Prediction of improvement in skin fibrosis in diffuse cutaneous systemic sclerosis: a EUSTAR analysis. Ann Rheum Dis. 2016;75 (10):1743-8. doi: 10.1136/annrheumdis-2015-208024. PubMed PMID:27016052 PubMed Central PMC5036205.
  36. Willems, LM, Redmond, AC, Stamm, TA, Boström, C, Decuman, S, Kennedy, AT et al.. Content of non-pharmacological care for systemic sclerosis and educational needs of European health professionals: a EUSHNet survey. Clin Exp Rheumatol. ;33 (4 Suppl 91):S153-9. . PubMed PMID:26339894 .
  37. Sandmeier, B, Jäger, VK, Nagy, G, Carreira, PE, Tzankov, A, Widuchowska, M et al.. Autopsy versus clinical findings in patients with systemic sclerosis in a case series from patients of the EUSTAR database. Clin Exp Rheumatol. ;33 (4 Suppl 91):S75-9. . PubMed PMID:26339891 .
  38. Wirz, EG, Jaeger, VK, Allanore, Y, Riemekasten, G, Hachulla, E, Distler, O et al.. Incidence and predictors of cutaneous manifestations during the early course of systemic sclerosis: a 10-year longitudinal study from the EUSTAR database. Ann Rheum Dis. 2016;75 (7):1285-92. doi: 10.1136/annrheumdis-2015-207271. PubMed PMID:26232495 .
  39. Ghrénassia, E, Avouac, J, Khanna, D, Derk, CT, Distler, O, Suliman, YA et al.. Prevalence, correlates and outcomes of gastric antral vascular ectasia in systemic sclerosis: a EUSTAR case-control study. J Rheumatol. 2014;41 (1):99-105. doi: 10.3899/jrheum.130386. PubMed PMID:24293584 .
  40. Müller-Ladner, U, Tyndall, A, Czirjak, L, Denton, C, Matucci-Cerinic, M, EUSTAR centres et al.. Ten years EULAR Scleroderma Research and Trials (EUSTAR): what has been achieved?. Ann Rheum Dis. 2014;73 (2):324-7. doi: 10.1136/annrheumdis-2013-203997. PubMed PMID:24121165 .
  41. Minier, T, Guiducci, S, Bellando-Randone, S, Bruni, C, Lepri, G, Czirják, L et al.. Preliminary analysis of the very early diagnosis of systemic sclerosis (VEDOSS) EUSTAR multicentre study: evidence for puffy fingers as a pivotal sign for suspicion of systemic sclerosis. Ann Rheum Dis. 2014;73 (12):2087-93. doi: 10.1136/annrheumdis-2013-203716. PubMed PMID:23940211 .
  42. Koumakis, E, Wipff, J, Dieudé, P, Ruiz, B, Bouaziz, M, Revillod, L et al.. TGFβ receptor gene variants in systemic sclerosis-related pulmonary arterial hypertension: results from a multicentre EUSTAR study of European Caucasian patients. Ann Rheum Dis. 2012;71 (11):1900-3. doi: 10.1136/annrheumdis-2012-201755. PubMed PMID:22896741 .
  43. Meier, FM, Frommer, KW, Dinser, R, Walker, UA, Czirjak, L, Denton, CP et al.. Update on the profile of the EUSTAR cohort: an analysis of the EULAR Scleroderma Trials and Research group database. Ann Rheum Dis. 2012;71 (8):1355-60. doi: 10.1136/annrheumdis-2011-200742. PubMed PMID:22615460 .
  44. Kuwana, M, Okazaki, Y. Quantification of circulating endothelial progenitor cells in systemic sclerosis: a direct comparison of protocols. Ann Rheum Dis. 2012;71 (4):617-20. doi: 10.1136/annrheumdis-2011-200713. PubMed PMID:22258488 .
  45. Walker, KM, Pope, J, Scleroderma Clinical Trials Consortium, Canadian Scleroderma Research Group. Expert agreement on EULAR/EUSTAR recommendations for the management of systemic sclerosis. J Rheumatol. 2011;38 (7):1326-8. doi: 10.3899/jrheum.101262. PubMed PMID:21459952 .
  46. Beyer, C, Distler, JH, Allanore, Y, Aringer, M, Avouac, J, Czirják, L et al.. EUSTAR biobanking: recommendations for the collection, storage and distribution of biospecimens in scleroderma research. Ann Rheum Dis. 2011;70 (7):1178-82. doi: 10.1136/ard.2010.142489. PubMed PMID:21285118 .
  47. Avouac, J, Fransen, J, Walker, UA, Riccieri, V, Smith, V, Muller, C et al.. Preliminary criteria for the very early diagnosis of systemic sclerosis: results of a Delphi Consensus Study from EULAR Scleroderma Trials and Research Group. Ann Rheum Dis. 2011;70 (3):476-81. doi: 10.1136/ard.2010.136929. PubMed PMID:21081523 .
  48. Avouac, J, Walker, U, Tyndall, A, Kahan, A, Matucci-Cerinic, M, Allanore, Y et al.. Characteristics of joint involvement and relationships with systemic inflammation in systemic sclerosis: results from the EULAR Scleroderma Trial and Research Group (EUSTAR) database. J Rheumatol. 2010;37 (7):1488-501. doi: 10.3899/jrheum.091165. PubMed PMID:20551097 .
  49. Becker, MO, Müller-Ladner, U, Riemekasten, G. [Towards an implementation of guidelines for the therapy of systemic sclerosis (scleroderma): between desire and reality]. Z Rheumatol. 2010;69 (4):310-7. doi: 10.1007/s00393-009-0523-6. PubMed PMID:20490516 .
  50. Kowal-Bielecka, O, Landewé, R, Avouac, J, Chwiesko, S, Miniati, I, Czirjak, L et al.. EULAR recommendations for the treatment of systemic sclerosis: a report from the EULAR Scleroderma Trials and Research group (EUSTAR). Ann Rheum Dis. 2009;68 (5):620-8. doi: 10.1136/ard.2008.096677. PubMed PMID:19147617 .
  51. Avouac, J, Kowal-Bielecka, O, Landewe, R, Chwiesko, S, Miniati, I, Czirjak, L et al.. European League Against Rheumatism (EULAR) Scleroderma Trial and Research group (EUSTAR) recommendations for the treatment of systemic sclerosis: methods of elaboration and results of systematic literature research. Ann Rheum Dis. 2009;68 (5):629-34. doi: 10.1136/ard.2008.095299. PubMed PMID:18957486 .
  52. Tyndall, A, Ladner, UM, Matucci-Cerinic, M. The EULAR Scleroderma Trials and Research Group (EUSTAR): an international framework for accelerating scleroderma research. Curr Opin Rheumatol. 2008;20 (6):703-6. doi: 10.1097/BOR.0b013e328311f841. PubMed PMID:18946332 .
  53. Distler, JH, Allanore, Y, Avouac, J, Giacomelli, R, Guiducci, S, Moritz, F et al.. EULAR Scleroderma Trials and Research group statement and recommendations on endothelial precursor cells. Ann Rheum Dis. 2009;68 (2):163-8. doi: 10.1136/ard.2008.091918. PubMed PMID:18653485 .
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EUSTAR Projects

EUSTAR actively encourages and supports the development and conducting of clinical and basic science research on systemic sclerosis. At-a-glance information on all current trials and projects hosted by EUSTAR is provided below.

  • VEDOSS Project News

  • The DeSScipher Project

See Introduction

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EUSTAR basic science guidelines
For general information and more detailed questions contact the boardmemebrs.


    In early September of 2010 started the announced days dedicated to the project VEDOSS (Very Early Diagnosis Of Systemic Sclerosis) presented during the first World Congress on Systemic Sclerosis held in Florence in February 2010.

    The doctors at this meeting agreed on the importance of very early diagnosis of the disease that can, in many cases, prevent and slow down, with appropriate treatment, the course of the disease. The projects will provide, through the Videocapillaroscopy, a wide-ranging non-invasive screening, to identify early signs of a possible development of the disease.

    The Videocapillaroscopy can give immediate results: the signals which show Raynaud’s phenomenon or swollen fingers, will be followed by further investigations on the presence of antinuclear antibodies.

    The Vedoss days were coordinated by the doctors of the Reference Center in Florence that organized 4 days of free screenings in 4 different towns of Tuscany (Florence, Montecatini Terme, Pescia and Pistoia). The initiative has been supported by the University Hospital of Florence and even from different patient groups and association, like ASSMaF, and found wide acceptance and enthusiasm. The visits took place on a motor home, equipped as a clinic, which made stops in the central squares of the places mentioned above.

    The volunteers of the patient association have worked together with the physicians giving a fundamental contribution to the success of the event. They arranged workstations, equipped with a desk for the first contacts with the public, distributed informational material about the disease and supported the work of doctors.

    All the days were preceded by press releases, articles from local newspapers, radio and television interviews that informed other medical colleagues in order to help them in the diagnosis of that patients who already presented the typical “cold hands”. The data collected during these Vedoss days “in the streets” were immediately recorded after the single examination and those people, who showed suspicious signs related to the disease, were invited to further detailed laboratory investigations. Many people came and wanted to get screened and a large number of leaflets about the disease were distributed to the participants. The creation of a dedicated Vedoss Center at the University Hospital Careggi in Florence allows the physicians to follow patients through Videocapillaroscopy screening and other investigations in the early stages of the disease.

    The DeSScipher Project

    DeSScipher is the acronym for ”to decipher the optimal management of Systemic Sclerosis”. It was an international EU-funded research project, and in fact currently the largest research project ever for Systemic sclerosis. It mainly consists of five observational, non-interventional studies, conducted over a period of at least 3 years (ended in 2013). The aim of this project is to improve the treatment strategies for Systemic Sclerosis, and thus to improve the quality of everyday life for patients living with their disease in the future. Moreover, DeSScipher aims to improve the education of patients and physicians, and to achieve a better care for patients by the development of accepted evidence-based clinical guidelines

    For more information, please visit our webpage

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