TY - JOUR T1 - The Spondyloarthritis Research Consortium of Canada Registry for Spondyloarthritis JF - The Journal of Rheumatology JO - J Rheumatol SP - 1343 LP - 1348 DO - 10.3899/jrheum.101102 VL - 38 IS - 7 AU - DAFNA D. GLADMAN AU - PROTON RAHMAN AU - RICHARD J. COOK AU - HUA SHEN AU - MICHEL ZUMMER AU - GLEN THOMSON AU - BINDU NAIR AU - SHERRY ROHEKAR AU - RENISE AYEARST AU - ROBERT D. INMAN AU - WALTER P. MAKSYMOWYCH Y1 - 2011/07/01 UR - http://www.jrheum.org/content/38/7/1343.abstract N2 - 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. ER -