Toronto Western Research Institute, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, Ontario, Canada.
J Rheumatol. 2011 Jul;38(7):1343-8. doi: 10.3899/jrheum.101102. Epub 2011 Apr 15.
The Spondyloarthritis Research Consortium of Cananda (SPARCC) is a transdiscliplinary research network of investigators interested in spondyloarthritis. The group has been supported by a new research initiative by The Arthritis Society. SPARCC aims to address the genetic basis of susceptibility of the disease and develop and validate clinical and imaging outcomes to assess disease activity and structural damage over time, the response to therapy, and the clinical burden of illness in terms of quality of life and disability. The first step was to develop a database that would allow ascertainment of phenotype for genetic studies, as well as accurate and detailed longitudinal information for disease expression and outcome studies. This article describes the SPARCC database and outlines difficulties and possible solutions for maintaining such a database.
加拿大脊柱关节炎研究联合会（SPARCC）是一个跨学科的研究网络，由对脊柱关节炎感兴趣的研究人员组成。该组织得到了关节炎协会新的研究计划的支持。SPARCC 的目标是确定疾病易感性的遗传基础，并开发和验证临床和影像学结果，以评估疾病活动和结构损伤随时间的变化、治疗反应以及疾病对生活质量和残疾的临床负担。第一步是建立一个数据库，以便对遗传研究进行表型确定，并对疾病表达和结果研究进行准确和详细的纵向信息。本文介绍了 SPARCC 数据库，并概述了维护此类数据库的困难和可能的解决方案。
