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国际合作时代的青少年特发性关节炎

Juvenile Idiopathic Arthritis in the Era of International Cooperation.

作者信息

Uziel Yosef

机构信息

Pediatric Rheumatology Unit, Department of Pediatrics, Meir Medical Center, Kfar Saba, Israel.

Sackler Faculty of Medicine, Tel Aviv University, Ramat Aviv, Israel.

出版信息

Rambam Maimonides Med J. 2017 Jan 30;8(1):e0003. doi: 10.5041/RMMJ.10278.

Abstract

Juvenile idiopathic arthritis (JIA) is the most common chronic disease of childhood. Improved understanding of its pathogenesis has led to international cooperation in clinical studies. Multicenter, international collaborations and research facilitate rapid enrollment of enough patients to enable a variety of studies, including those of epidemiology, diagnostic and classification criteria, genetic disease predisposition, pathogenesis, outcomes, and treatment protocols. In the last 20 years, the vision of the Pediatric Rheumatology International Trial Organization (PRINTO) has become a reality of worldwide collaboration in pediatric rheumatology research, including North American and European research groups. Major advances have been made in treating systemic JIA and its main complication, macrophage-activating syndrome (MAS). Single Hub and Access Point to Pediatric Rheumatology in Europe (SHARE) is a project of the European Society of Pediatric Rheumatology with the goal of improving clinical care. Based on evidence in the scientific literature, position papers regarding optimal clinical approaches and care have been published. Formal, validated assessment tools to evaluate response to treatment have been developed. Recommendations have been established to encourage international research collaborations, especially in light of major advances achieved in the genetics of pediatric rheumatologic diseases and the need to share biological samples among different countries and continents. Every participating country has disease information available for patients and families. Additionally, educational programs and updated syllabi for pediatric rheumatology have been written to promote similar, high-level academic training in different countries. These efforts have resulted in significant improvements in treatment and in patient prognosis. However, improved cooperation is needed to enhance research with biological and genetic samples. The Israeli Research Group for Pediatric Rheumatology is very active and has made significant contributions to the field.

摘要

幼年特发性关节炎(JIA)是儿童期最常见的慢性疾病。对其发病机制的深入了解促使了临床研究方面的国际合作。多中心、国际合作与研究有助于快速招募足够数量的患者,从而开展各种研究,包括流行病学、诊断和分类标准、遗传易感性、发病机制、结局以及治疗方案等方面的研究。在过去20年里,儿科风湿病国际试验组织(PRINTO)的愿景已成为儿科风湿病研究领域全球合作的现实,其中包括北美和欧洲的研究团队。在治疗全身型JIA及其主要并发症巨噬细胞活化综合征(MAS)方面已取得重大进展。欧洲儿科风湿病单一枢纽与接入点(SHARE)是欧洲儿科风湿病学会的一个项目,旨在改善临床护理。基于科学文献中的证据,已发表了关于最佳临床方法和护理的立场文件。已开发出用于评估治疗反应的经过正式验证的评估工具。已制定相关建议以鼓励国际研究合作,特别是鉴于儿科风湿性疾病遗传学方面取得的重大进展以及不同国家和大陆之间共享生物样本的需求。每个参与国都为患者和家庭提供疾病信息。此外,还编写了儿科风湿病教育项目和更新的教学大纲,以促进不同国家开展类似的高水平学术培训。这些努力已使治疗和患者预后有了显著改善。然而,需要加强合作以促进对生物样本和基因样本的研究。以色列儿科风湿病研究小组非常活跃,为该领域做出了重大贡献。

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