Bootsma, H.

Pers, J. O.

Tzioufas, A. G.

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EULAR Sjogren's syndrome study group: an eSSential way to address the unmet needs of the disease

University of Groningen

   University of GroningenEULAR Sjogren's syndrome study groupTzioufas, A. G.; Bootsma, H.; Pers, J. O.Published in:Clinical and Experimental RheumatologyIMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite fromit. Please check the document version below.Document VersionPublisher's PDF, also known as Version of recordPublication date:2021Link to publication in University of Groningen/UMCG research databaseCitation for published version (APA):Tzioufas, A. G., Bootsma, H., & Pers, J. O. (2021). EULAR Sjogren's syndrome study group: an eSSentialway to address the unmet needs of the disease. Clinical and Experimental Rheumatology, 38(4), S23-S24.https://www.clinexprheumatol.org/abstract.asp?a=16014CopyrightOther than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of theauthor(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).The publication may also be distributed here under the terms of Article 25fa of the Dutch Copyright Act, indicated by the “Taverne” license.More information can be found on the University of Groningen website: https://www.rug.nl/library/open-access/self-archiving-pure/taverne-amendment.Take-down policyIf you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediatelyand investigate your claim.Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons thenumber of authors shown on this cover page is limited to 10 maximum.Download date: 19-11-2022S-23Clinical and Experimental Rheumatology 20201Department of Pathophysiology, School of Medicine, National and Kapodistrian University of Athens, Greece; 2Department of Rheumatology and Clinical Immunology, University Medical Centre Groningen, University of Groningen, The Netherlands; 3LBAI, U1227, University of Brest, INSERM, CHU de Brest, France.Athanasios G. Tzioufas, MD, PhDHendrika Bootsma, MD, PhDJacques-Olivier Pers, MD, PhDPlease address correspondence to:         Athanasios G. Tzioufas,Department of Pathophysiology, School of Medicine, National and Kapodistrian University of Athens,Mikras Asias Str. 75,11527 Athens, Greece.E-mail: agtzi@med.uoa.grReceived on June 19, 2020 and accepted on June 23, 2020.Clin Exp Rheumatol 2020; 38 (Suppl. 126): S23-S24.© Copyright CliniCal and ExpErimEntal rhEumatology 2020.Key words: primary Sjögren’s syndrome, biomarkersCompeting interests: none declared.In 2017 EULAR created a study group devoted to Sjögren’s syndrome (SS), called eSSential (EULAR Sjögren’s Syndrome Experimental aNd Trans-lational Investigative Alliance Study Group). The aim of this study group was to promote the sharing of knowl-edge for SS, define biomarkers, facili-tate synergistic-collaborative research initiatives in Europe and address the unmet needs of the disease. Over the last 2-3 years, the study group present-ed very interesting and helpful results including the standardisation of labial salivary gland biopsies (1), the Foreum grant for the stratification of SS patients (2) and results from the ultrasound sub-study group, aiming to validate the ul-trasound of salivary glands as a diag-nostic tool for the disease (3). During these years the study group was led by F. Barone, T. Radstake and F. Ng who have to be congratulated for the good work done.eSSential is now passing into a new era, where the aims have virtually not changed, but they have been specified as follows:• Develop a core dataset for SS;• Definition of clinical phenotypes of Sjögren’s syndrome, based on large integrated cohorts;• Define universally accepted predic-tion models for lymphomagenesis;• Develop “standard operation pro-cedures” for the collection and storage of biological samples;• Develop standardisation measure-ments to use salivary gland biop-sies as outcome in clinical trials;• Validation of old and discovery of new biomarkers (4);• Application of system biology approaches in the clinical setting.• Investigate the use of ultrasounds as tools of clinical activity and outcome (5).Our primary focus is to communicate research initiatives from all over Europe that have been granted for SS. eSSential functions as a “EULAR umbrella” that includes the following   projects: i) HarmonicSS, which has as a major objective the harmonisation of SS pa-tients and through this to address the unmet needs of the disease (6).ii) NECESSITY, a European project (IMI: innovative medicines initiative) to define new clinical useful endpoints in an interventional trial based on that stratification of patients with primary Sjögren’s syndrome. iii) PRECISESADS, that attempts to perform, using high-throughput OM-ICs data (genetic, epigenomic, tran-scriptomic, combined with flow cyto-metric data, multiplexed cytokines, as well as classical serology), an integrat-ed bioinformatics analysis to identify signatures that will provide clinically and immunopathologically relevant in-formation, with the aim of reclassifying all patients affected by SS into clusters of molecular entities, whatever their disease activity or treatment in view of precision medicine strategies (7). iv) to define new composite indexes for the outcome of patients, as for ex-ample is the Composite of Relevant Endpoints for Sjögren’s Syndrome (CRESS), based on the expert opinion and analysis of trial data (8). v) EULAR ultrasound pSS Study Group for the development of a new scoring system for salivary glands, use-ful for the follow-up in clinical trials. All these research endeavours have recently been presented during the EULAR 2020 congress. We feel that among the priorities of eS-Sential it is also to find the proper ways for interaction and complementary ac-tions that will facilitate the maximal ef-fect of research for SS in Europe. To this EditorialEULAR Sjögren’s syndrome study group: an eSSential way to address the unmet needs of the diseaseA.G. Tzioufas1, H. Bootsma2, J.O. Pers3S-24 Clinical and Experimental Rheumatology 2020EULAR Sjögren’s syndrome study group / A.G. Tzioufas et al.end, in the recent e-EULAR Congress, eSSential presented work that has been done in the context of HarmonicSS, re-garding the aspect of the disease from the primary care point of view. This is particularly important, since many SS patients are examined by primary care providers and not specialised centres, thus providing new insights for the public health policy that should be fol-lowed in SS. Another significant action was the presence and active participa-tion of patients’ advocacies with SS and the initiatives that have been started. The last two years under the leadership of EULAR PARE, which is a partner of HarmonicSS, a patients’ associa-tion with SS beyond the national levels (the SS-Europe) has been created for the first time. This initiative will give us a more concise view of the social, economic and scientific burden of the disease from the patient’s perspective.In the new decade eSSential has the main mission to bridge the activities for SS at multiple levels including clini-cal, social and public health policy. Our goal is to efficiently collaborate not only with the individual research groups of Europe, but also to create stable bonds with activities in other continents, such as the SS study group of the American College of Rheumatology (ACR) and others. We trust that these efforts will be embraced and augmented by all physicians, researchers and people in-volved in the disease.References  1. FISHER BA, JONSSON R, DANIELS T et al.: Standardization of labial salivary gland histopathology in clinical trials in primary Sjögren’s syndrome; Sjögren’s histopathol-ogy workshop group (appendix) from ES-SENTIAL (EULAR Sjögren’s syndrome study group). Ann Rheum Dis 2017; 76: 1161-8.  2. NG W-F: SP0173 Stratifying primary Sjögren’s syndrome patients. Ann Rheum Dis 2018; 77 (Suppl. 2): 46.  3. MOSSEL E, DELLI K, van NIMWEGEN JF et al.: Ultrasonography of major salivary glands compared with parotid and labial gland biopsy and classification criteria in patients with clinically suspected primary Sjögren’s syndrome. Ann Rheum Dis 2017; 76: 1883-9.  4. TZIOUFAS AG, GOULES A: The necessity of novel biomarkers in primary Sjögren’s syn-drome. Clin Exp Rheumatol 2019; 37 (Suppl. 118): S16-8.  5. INANC N, ŞAHINKAYA Y, MUMCU G et al.: Evaluation of salivary gland ultrasonography in primary Sjögren’s syndrome: does it re-flect clinical activity and outcome of the dis-ease? Clin Exp Rheumatol 2019; 37 (Suppl. 118): S140-5.  6. GOULES AV, EXARCHOS TP, PEZOULAS VC et al.: Sjögren’s syndrome towards precision medicine: the challenge of harmonisation and integration of cohorts. Clin Exp Rheu-matol 2019; 37 (Suppl. 118): S175-84.  7. BARTUREN G, BABAEI S, CATALÀ-MOLL F et al.: Integrative analysis reveals a molecu-lar stratification of systemic autoimmune diseases. integrative analysis reveals a mo-lecular stratification of systemic autoimmune diseases. medRxiv 2020.02.21.  8. ARENDS S, VAN NIMWEGEN JF, VERSTAP-PEN GM et al.: Composite of Relevant End-points for Sjögren’s Syndrome (CRESS) [ab-stract]. Ann Rheum Dis 2020; 79 (Suppl. 1): 1026-7.

EULAR Sjogren's syndrome study group:an eSSential way to address the unmet needs of the disease

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EULAR Sjogren's syndrome study group:an eSSential way to address the unmet needs of the disease

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