title: Utilizing registries in systemic lupus erythematosus clinical research.
abstract: Systemic lupus erythematosus is a complex and heterogeneous autoimmune disease with a relatively low incidence. Clinical research in this disease at individual centers is complicated by the difficulty of accruing enough patient numbers. In this context, the development of cohorts and multi-institutional registries during the last decades has allowed an increase in knowledge regarding the clinical course and management of this disease. This article aims to describe the main study designs linked to lupus registries and to give an overview of the main international registries and cohorts, as well as their principal achievements in the context of this complex entity.
authors.affiliation: Rheumatology Section, Hospital Sierrallana, IFIMAV, University of Cantabria, Avenida Manuel Teir s/n 39300, Torrelavega, Cantabria, Spain.
authors.forename: Ignacio
authors.initials: I
authors.lastname: Villa-Blanco
authors.forename: Jaime
authors.initials: J
authors.lastname: Calvo-Alén
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research / Q000379:methods*; D002986:Clinical Trials as Topic; D005260:Female; D006801:Humans; D015994:Incidence; D008180:Lupus Erythematosus, Systemic / Q000453:epidemiology* / Q000276:immunology / Q000503:physiopathology* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D012042:Registries / Q000592:standards*; D055815:Young Adult