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

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

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Databases, Factual / standards*
  • Humans
  • International Cooperation
  • Medical Records Systems, Computerized / standards*
  • Registries / standards*
  • Spain / epidemiology
  • Spondylarthritis / classification
  • Spondylarthritis / epidemiology*
  • Spondylarthritis / physiopathology