Juvenile Idiopathic Arthritis Registry at King Abdullah Specialized Children's Hospital (JIAR-KASCH) in Riyadh, Saudi Arabia.

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.