Official websites use. Share sensitive information only on official, secure websites. E-mail: eduardo. To present the usefulness of a centralized system of data collection for the development of an international multicentre registry of SpA.
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. 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.
Health-care managers need reliable instruments to help them distribute and allocate health and social resources objectively and fairly. These instruments should be flexible and provide real-time data, and they should easily incorporate any change in practice and scientific knowledge.
Disease registries are most suitable for this task, as they provide real-time data on the frequency, geographic and temporary distribution, as well as on the pattern of the disease [ 1 ]. They inform about the case mix in different locations and provide an enlightening tool for assessing the impact of the disease and clinical practice variability. Furthermore, disease registries are an ideal source of random samples for cohort studies or for caseβcontrol studies, the correct setting to test medical hypothesis [ 2 ].
Our experience from the registries developed over the past few years has shown us their usefulness in describing the epidemiological aspects, clinical pattern, disease activity, structural damage, response to therapy, impairment degree in quality of life and socio-economic impact associated with inflammatory rheumatic diseases, in our case focused on patients with SpAs. Each centre has individual access to the registry, either for investigation or for managing purposes.
