The Canadian Alliance of Pediatric Rheumatology Investigators National Juvenile Idiopathic Arthritis Registry

What this Trial Is About

Juvenile Idiopathic Arthritis (JIA) is a chronic inflammatory condition affecting children and characterized by joint and organ inflammation. This ongoing national registry study collects detailed information on Canadian children newly diagnosed with JIA to better understand the disease's course, outcomes, and medication side effects. The study aims to improve healthcare decisions and provide new insights into managing JIA through collaboration among pediatric rheumatologists across Canada. The registry collects data from both physicians and families at regular clinic visits without requiring extra visits solely for the study. Information is gathered through online or paper forms, including clinical data and patient-reported outcomes, with privacy protections in place. The registry supports quality control, data monitoring, and annual reporting, enabling comparisons of treatments and outcomes across Canada and with other countries. Participants contribute data from diagnosis onward, with ongoing follow-up visits to track disease activity, pain, quality of life, and disability over time. The main measure is the proportion of children achieving inactive disease at one year. The study also collects secondary outcomes like disease activity scores and functional assessments. Data access is carefully managed, and results are shared with families, researchers, and healthcare organizations to support improved care and research.

CAPRI National Juvenile Idiopathic Arthritis Registry