title: Ankylosing spondylitis clinical registries: principles, practices and possibilities.
abstract: The need for a rigorously developed longitudinal registry of patients with spondyloarthritis (SpA) is clear and urgent. Like randomized controlled trials, registries rely on a prospective, systematic protocol-driven approach to data acquisition to assess outcomes for a prescribed cohort of patients. Registries seek to capture large numbers of patients across large geographic zones and can serve as a valuable resource for patient advocacy, patient education and support, incidence and prevalence, and broad demographic profiles. Building on 3 existing registries--the Prospective Study of Outcomes in Ankylosing Spondylitis, the Program to Understand the Longterm Outcomes of Spondyloarthritis (PULSAR) and the University Health Network Spondyloarthritis Program--these registries and the Spondylitis Association of America propose to form a combined registry of North American SpA patients. The combined registry would, ideally, complement ongoing clinical goals and improve patient care.
authors.affiliation: Denver Veterans Affairs Medical Center, University of Colorado, Denver, Colorado, USA.
authors.forename: Liron
authors.initials: L
authors.lastname: Caplan
authors.forename: Daniel O
authors.initials: DO
authors.lastname: Clegg
authors.forename: Robert D
authors.initials: RD
authors.lastname: Inman
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009656:North America / Q000453:epidemiology; D011379:Prognosis; D012042:Registries; D013167:Spondylitis, Ankylosing / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy