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. 2011 Jan;50(1):132-6.
doi: 10.1093/rheumatology/keq253. Epub 2010 Sep 7.

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

Ruxandra Schiotis  1 , Pilar Font, Alejandro Escudero, Pedro Zarco, Raquel Almodovar, Jordi Gratacós, Juan Mulero, Xavier Juanola, Carlos Montilla, Estefanía Moreno, Rafael Ariza Ariza, Eduardo Collantes-Estevez; REGISPONSER working group
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Usefulness of a centralized system of data collection for the development of an international multicentre registry of spondyloarthritis

Ruxandra Schiotis et al. Rheumatology (Oxford). 2011 Jan.

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.

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Figures

F<sc>ig.</sc> 1
Fig. 1
Evolution of REGISPONSER registry.
See this image and copyright information in PMC

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