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Abstract

Objectives: To establish and maintain a comprehensive, up-to-date registry of juvenile idiopathic arthritis (JIA) cases, and to outline the methodology used in creating it. Methods: Retrospective and prospective data collection commenced in August 2021, using the Hospital Information System to identify electronic medical records of JIA patients. All individuals diagnosed with JIA and receiving follow-up care at King Abdullah Specialized Children’s Hospital (KASCH) in Riyadh were included. A broad range of variables covering sociodemographic characteristics, clinical features, laboratory results, imaging findings, and therapeutic medications were recorded in the REDCap platform. Data collection update occurs every 6 months. Results: By December 2024, the registry included 240 patients. The median age at presentation was 8 years (IQR: 4–11). Most patients (79%) were from the central region of Saudi Arabia, while the remainder were distributed across other regions. Oligoarthritis was the most common subtype (32.9%), followed by systemic JIA (25.8%). Among the biologic agents used to treat JIA, anti-TNF agents were the most frequently administered (62.5%), followed by anakinra (17%) and tocilizumab (13%). Conclusion: The JIAR-KASCH provides an in-depth profile of JIA epidemiology, clinical presentation, and management in Saudi Arabia. It also provides a framework that can guide the development of similar national registries, particularly in pediatric rheumatology, facilitating robust data collection and long-term disease monitoring.

Article Type

Research Article

First Page

74

Last Page

78

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