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干燥综合征工作组:2023 年 OMERACT 会议和暂定领域生成。

The Sjögren's Working Group: The 2023 OMERACT meeting and provisional domain generation.

机构信息

Department of Medicine, Division of Rheumatology and Clinical Immunology, University of Pittsburgh, Pittsburgh, USA.

Department of Rheumatology, National Reference Center for Auto-immune Diseases, Sjogren's ERN Reconnect Center, Assistance Publique-Hôpitaux de Paris, Hôpital Bicêtre, Université Paris-Saclay, INSERM U1184, Le Kremlin Bicêtre, Paris, France.

出版信息

Semin Arthritis Rheum. 2024 Apr;65:152378. doi: 10.1016/j.semarthrit.2024.152378. Epub 2024 Jan 23.

Abstract

Sjögren's disease (SjD) is a systemic autoimmune exocrinopathy with key features of dryness, pain, and fatigue. SjD can affect any organ system with a variety of presentations across individuals. This heterogeneity is one of the major barriers for developing effective disease modifying treatments. Defining core disease domains comprising both specific clinical features and incorporating the patient experience is a critical first step to define this complex disease. The OMERACT SjD Working Group held its first international collaborative hybrid meeting in 2023, applying the OMERACT 2.2 filter toward identification of core domains. We accomplished our first goal, a scoping literature review that was presented at the Special Interest Group held in May 2023. Building on the domains identified in the scoping review, we uniquely deployed multidisciplinary experts as part of our collaborative team to generate a provisional domain list that captures SjD heterogeneity.

摘要

干燥综合征(SjD)是一种系统性自身免疫外分泌疾病,其主要特征为干燥、疼痛和疲劳。SjD 可影响任何器官系统,个体之间表现多样。这种异质性是开发有效疾病修正治疗方法的主要障碍之一。定义包含特定临床特征并纳入患者体验的核心疾病领域是定义这种复杂疾病的关键第一步。OMERACT SjD 工作组于 2023 年举行了第一次国际合作混合会议,应用 OMERACT 2.2 过滤器来确定核心领域。我们实现了第一个目标,即进行了范围广泛的文献综述,并在 2023 年 5 月举行的特别兴趣小组会议上进行了介绍。在范围广泛的综述中确定的领域的基础上,我们还特别部署了多学科专家作为我们协作团队的一部分,以生成一个临时的领域列表,该列表可捕获 SjD 的异质性。

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本文引用的文献

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Health-related quality of life and costs in Sjögren's syndrome.干燥综合征患者的健康相关生活质量与成本
Rheumatology (Oxford). 2021 Jun 18;60(6):2588-2601. doi: 10.1093/rheumatology/key370.
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Estimating indirect costs in primary Sjögren's syndrome.原发性干燥综合征的间接成本估算。
J Rheumatol. 2010 May;37(5):1010-5. doi: 10.3899/jrheum.090734. Epub 2010 Apr 1.

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