International registry for biologics in systemic lupus erythematosus (IRBIS). The aim is to characterize the use of biologics in patients with SLE in current rheumatology specialty. IRBIS I is a retrospective registry and IRBIS II is a prospective registry.
The IRBIS registries are an international collaboration between academic investigators with a focus on patients with systemic lupus erythematosus (SLE) who are treated with biologic agents. The use of registries, where data is collected systematically is an important source of information and has the advantage of reflecting the real world environment for patients. Because registries provide data on various aspects of treatment and goals (efficacy, safety, epidemiology, genetics, and more), registries contribute in crucial ways to make optimal therapy choices and guide future research. In IRBIS I (launched 2010), we have collected data retrospectively, i.e., requested investigators to extract and provide data from their own registries on SLE patients ever treated with biologic agents. This registry contains data from baseline (day when biologic was inititated) and yearly follow ups for 465 patients (at the most 3 year-follow up). In IRBIS II (launched 2012), we have collected data prospectively, i.e., requested investigators to provide data on SLE patients who are to start a biologic treatment. This registry contains information on approximately 80 patients. Additional differences between the two registries are more frequent follow ups (3, 6 and 12 months, thereafter yearly), collection of data on patients with non-biologic treatments and collection of patient reported outcomes in IRBIS II.
IRBIS I: expected to be completed year 2020
IRBIS II: expected to be completed year 2025
IRBIS I: Has been presented yearly at international conferences (ACR, EULAR).
IRBIS II: Ongoing enrollment and patient data collection.
Anna Andersson, Research technician
Ronald van Vollenhoven
08-517 711 61