Usefulness of a centralized system of data collection for the development of an international multicentre registry of spondyloarthritis

Abstract

Objective. To present the usefulness of a centralized system of data collection for the development of an international multicentre registry of SpA.Method. The originality of this registry consists in the creation of a virtual network of researchers in a computerized Internet database. From its conception, the registry was meant to be a dynamic acquiring system.Results. REGISPONSER has two developing phases (Conception and Universalization) and gathers several evolving secondary projects (REGISPONSER-EARLY, REGISPONSER-AS, ESPERANZA and RESPONDIA). Each sub-project answered the necessity of having more specific and complete data of the patients even from the onset of the disease so, in the end, obtaining a well-defined picture of SpAs spectrum in the Spanish population.Conclusion. REGISPONSER is the first dynamic SpA database composed of cohorts with a significant number of patients distributed by specific diagnosis, which provides basic specific information of the sub-cohorts useful for patients’ evaluation in rheumatology ambulatory consulting.

Differential Features Between Primary Ankylosing Spondylitis and Spondylitis Associated with Psoriasis and Inflammatory Bowel Disease

“…Of interest, however, disease activity, functional studies, and quality of life did not differ between groups. These findings are in accord with recent reports that psoriatic axial involvement is as disabling as primary AS for 2 reasons: the disease progresses for a long time period, and it brings with it the burden of peripheral arthritis 25,26 .…”

Inception and utility of a renal replacement registry using administrative health data in North‐East Italy

“…Disease registries are useful tools for public health planning, for evaluating clinical practice and for providing information on cohorts of patients (Schiotis et al . ; Guzmán Herrador et al ; Costa et al ). Renal registries, in particular, have proven useful for assessing the incidence, prevalence, associated conditions and mortality of patients receiving renal replacement therapy (RRT) in various countries (e.g.…”

Challenges to conquer from the gender perspective in medicine: The case of spondyloarthritis

“…It may have limited the statistical power to detect differences according to the sex of patients in the variables under study, such as the delay in medical diagnosis and to detect differences between the self-report of symptoms of women with spondyloarthritis and data collected in clinical records. However, the study represents the spondyloarthritis population by sex and coincides in the frequency of clinical manifestations with the National Registry of Spondyloarthritis Patients in Spain [ 26 ].…”