PT - JOURNAL ARTICLE 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 TI - The Spondyloarthritis Research Consortium of Canada Registry for Spondyloarthritis AID - 10.3899/jrheum.101102 DP - 2011 Jul 01 TA - The Journal of Rheumatology PG - 1343--1348 VI - 38 IP - 7 4099 - http://www.jrheum.org/content/38/7/1343.short 4100 - http://www.jrheum.org/content/38/7/1343.full SO - J Rheumatol2011 Jul 01; 38 AB - 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.