Lupus registries: evolution and challenges

Abstract

Objectives: To review the current status of lupus registries, highlight the importance and evolution of registries in clinical lupus research, discuss substantial advances in the understanding of lupus through the use of registries, and discuss the future role of registries in terms of opportunities and challenges.

Methods: The literature reviewed originated from the PubMed database and was limited to adult disease in articles published before June 01, 2008. Keywords used in the PubMed search included the following terms: systemic lupus erythematosus, registry, cohort, and database. All articles were sorted and analyzed according to a template devised by the authors describing the different types of registries.

Results: The most important features of a lupus registry are that they contain a large number of subjects and reflect a relatively real world environment for lupus patients. Data obtained from the lupus registries are essential for planning, designing, and conducting clinical lupus studies, especially those difficult, inappropriate, or even unethical to study in randomized controlled trials. Up to now, some well-conducted registries have received recognition for their contributions to lupus research through their focus on different goals: epidemiology, genetics, ethnic diversity, clinical features, or outcomes. Although they have evolved in design and study emphasis steadily, there are still many issues left to resolve. Apart from the development and future direction of the lupus registry, attention needs to be applied to normalizing the ethical and legal rules involving a lupus registry.

Conclusions: Lupus registries have demonstrated high standards and achieved much success through decades of effort, but they are still in an active state of evolution as they address more questions with greater clarity and sophistication.