1064: Characterization of Juvenile Idiopathic Arthritis in Indigenous North American Children enrolled in a North American registry

Background/Purpose: Several studies detail a higher prevalence and severity of juvenile idiopathic arthritis (JIA) in Indigenous North American (INA) children compared to the general population. The reasons for this pattern are likely multifactorial, but efforts to investigate them are hindered by a paucity of data available for this population. The Childhood Rheumatology and Research Alliance (CARRA) registry offers a unique opportunity to investigate JIA in INA patients from across the U.S. and Canada using prospectively collected data confirmed by pediatric rheumatologists. We sought to characterize clinical presentation, serologic profiles and treatment course of JIA in the INA children captured in the CARRA registry.

Methods: Disease-related data was extracted from the CARRA registry for all participants of INA ancestry with a physician diagnosis of JIA. Data included sex-assigned at birth, self-identified ancestry, JIA subtype, serologies, age at diagnosis, presence of uveitis, and use of biologic medication. For the purposes of this study, participants with extended oligoarthritis were counted with those with polyarticular arthritis and sorted into sero-positive and sero-negative groups accordingly. Demographic data was also collected, including zip codes of participants.

Results: A total of 195 participants of INA ancestry are identified, making up approximately 1.7% of registry participants from the U.S. and Canada. Of these 195, 44 (23%) are male and 151 (77%) are female. Polyarticular, RF-negative arthritis was the most common subtype (38% of cases), followed by oligoarticular arthritis (26% of cases). 68% of INA participants received biologic therapies during their treatment. Figure 1 displays a map of enrollment centers with INA participants, and shows that only a small number of INA children were enrolled from the northern Great Plains, Canadian prairie provinces, and Alaska. The average distance traveled from home to enrollment site was 155 miles.

Conclusion: This is the first North America-wide survey of INA children with JIA using a national registry with prospectively collected data. We have characterized the disease presentation and treatment of these patients and analysis is underway to compare them with non-indigenous children in the registry. Further work is needed to evaluate the representativeness of INA children in the registry, and to identify opportunities to improve our understanding of JIA in this population.

Disclaimer: This study used data collected in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. The views expressed are the authors' and do not necessarily represent the view of CARRA

Acknowledgements: This work could not have been accomplished without the aid of the following organizations: The NIH's National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) & the Arthritis Foundation (AF). We would also like to thank all participants and hospital sites that recruited patients for the CARRA Registry.