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用于开发国际多中心脊柱关节炎登记处的集中数据收集系统的实用性。

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

机构信息

Rheumatology Department, Hospital Universitario Reina Sofía, Avda. Menendez Pidal s/n, 14004 Córdoba, Spain.

出版信息

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.

摘要

目的

介绍一种集中数据收集系统在开发 SpA 国际多中心登记处方面的应用。

方法

该登记处的创新性在于创建了一个研究人员的虚拟网络,该网络存在于计算机互联网数据库中。从一开始,该登记处就被设计为一个动态采集系统。

结果

REGISPONSER 有两个发展阶段(构思和普及),并汇集了几个不断发展的次级项目(REGISPONSER-EARLY、REGISPONSER-AS、ESPERANZA 和 RESPONDIA)。每个子项目都满足了对患者更具体、更完整数据的需求,甚至从疾病发病开始,因此,最终获得了西班牙人群中 SpA 谱的明确图像。

结论

REGISPONSER 是第一个由具有特定诊断的大量患者组成的动态 SpA 数据库,它提供了亚队列的基本特定信息,这些信息对风湿病门诊咨询中患者的评估有用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9be6/2999954/872cfbec3b0a/keq253f1.jpg

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