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 subcohorts useful for patients' evaluation in rheumatology ambulatory consulting. © The Author(s) 2010. Published by Oxford University Press on behalf of The British Society for Rheumatology.