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RMD Open. 2015 Feb 20;1(1):e000022. doi: 10.1136/rmdopen-2014-000022. eCollection 2015.

EULAR Sjögren's syndrome disease activity index (ESSDAI): a user guide.

Author information

1
Department of Rheumatology , Hôpitaux Universitaires Paris-Sud, Assistance Publique-Hopitaux de Paris, Université Paris-Sud, INSERM U1012 , Le Kremlin Bicêtre , France.
2
Rheumatology Department , University Hospitals Birmingham NHS Foundation Trust , Birmingham , UK.
3
Laboratory of Autoimmune Diseases "Josep Font", CELLEX-IDIBAPS, Department of Autoimmune Diseases , ICMiD, Hospital Clinic , Barcelona , Spain.
4
Department of Rheumatology , Skane University Hospital Malmö, Lund University , Malmo , Sweden.
5
Department of Rheumatology and Clinical Immunology , University of Groningen, University Medical Center Groningen , Groningen , The Netherlands.
6
Department of Pathophysiology , School of Medicine, University of Athens , Athens , Greece.
7
Rheumatology , Centre National de Référence des Maladies Auto-Immunes Rares, INSERM UMRS_1109, Fédération de Médecine Translationnelle de Strasbourg (FMTS), Strasbourg University Hospital, Université de Strasbourg , Strasbourg , France.
8
Rheumatology Department , Charité, University Hospital , Berlin , Germany.
9
Center of Clinical Epidemiology , Hôpital Hôtel Dieu , Paris , France ; INSERM U738, Université Paris-René Descartes , Paris , France.
10
Sections of Rheumatology , Instituto San Giuseppe, Como and Casa di Cura di Lecco , Lecco , Italy.

Abstract

The EULAR Sjögren's syndrome (SS) disease activity index (ESSDAI) is a systemic disease activity index that was designed to measure disease activity in patients with primary SS. With the growing use of the ESSDAI, some domains appear to be more challenging to rate than others. The ESSDAI is now in use as a gold standard to measure disease activity in clinical studies, and as an outcome measure, even a primary outcome measure, in current randomised clinical trials. Therefore, ensuring an accurate and reproducible rating of each domain, by providing a more detailed definition of each domain, has emerged as an urgent need. The purpose of the present article is to provide a user guide for the ESSDAI. This guide provides definitions and precisions on the rating of each domain. It also includes some minor improvement of the score to integrate advance in knowledge of disease manifestations. This user guide may help clinicians to use the ESSDAI, and increase the reliability of rating and consequently of the ability to detect true changes over time. This better appraisal of ESSDAI items, along with the recent definition of disease activity levels and minimal clinically important change, will improve the assessment of patients with primary SS and facilitate the demonstration of effectiveness of treatment for patients with primary SS.

KEYWORDS:

Disease Activity; Outcomes research; Sjögren's Syndrome

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