Childhood-onset systemic lupus erythematosus (cSLE) accounts for 15%-20% of SLE cases but has been challenging to study globally due to variations in registries. To standardize and improve research, a collaborative initiative led by the Childhood Arthritis Rheumatology Research Alliance (CARRA) and Paediatric Rheumatology European Society (PReS) aimed to create Core and Expanded cSLE Datasets. This initiative involved 21 international cSLE experts and 4 patients who participated in a Delphi process to define the datasets through consensus.
The Core cSLE Dataset, containing 46 key items, includes essential data for clinical research, such as demographics, clinical features, laboratory results, medications, and adverse events. The Expanded cSLE Dataset adds 26 more items, including patient-reported outcomes. Consensus was also reached on data collection time points: baseline, quarterly follow-up visits, annually, and flare visits. These standardized datasets, developed with input from global experts and patient representatives, aim to facilitate international research collaboration and enhance understanding of cSLE in children and adolescents.
Reference: Sadun RE, Cooper JC, Belot A, et al. Development of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research. Ann Rheum Dis. 2025 Feb;84(2):158-168. doi: 10.1136/ard-2024-226528. Epub 2025 Jan 2. PMID: 39919891.
