title: The Spondyloarthritis Research Consortium of Canada registry for spondyloarthritis.
abstract: 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.
authors.affiliation: Toronto Western Research Institute, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, Ontario, Canada. dafna.gladman@utoronto.ca
authors.forename: Dafna D
authors.initials: DD
authors.lastname: Gladman
authors.forename: Proton
authors.initials: P
authors.lastname: Rahman
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Cook
authors.forename: Hua
authors.initials: H
authors.lastname: Shen
authors.forename: Michel
authors.initials: M
authors.lastname: Zummer
authors.forename: Glen
authors.initials: G
authors.lastname: Thomson
authors.forename: Bindu
authors.initials: B
authors.lastname: Nair
authors.forename: Sherry
authors.initials: S
authors.lastname: Rohekar
authors.forename: Renise
authors.initials: R
authors.lastname: Ayearst
authors.forename: Robert D
authors.initials: RD
authors.lastname: Inman
authors.forename: Walter P
authors.initials: WP
authors.lastname: Maksymowych
mesh_terms: D000328:Adult; D015415:Biomarkers / Q000097:blood; D002170:Canada; D016207:Cytokines / Q000097:blood; D019992:Databases as Topic; D005260:Female; D020022:Genetic Predisposition to Disease / Q000235:genetics; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012042:Registries; D012189:Retrospective Studies; D012720:Severity of Illness Index; D025241:Spondylarthritis / Q000235:genetics / Q000473:pathology / Q000628:therapy
chemical_list: D015415:Biomarkers; D016207:Cytokines