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Usefulness of a centralized system of data collection for the development of an international multicentre registry of spondyloarthritis
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 con...
Autores principales: | , , , , , , , , , , , |
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Formato: | Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2011
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2999954/ https://www.ncbi.nlm.nih.gov/pubmed/20823095 http://dx.doi.org/10.1093/rheumatology/keq253 |
Sumario: | 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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