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The childhood arthritis & rheumatology research alliance network registry: demographics and characteristics of the initial 6-month cohort
Pediatric Rheumatology volume 10, Article number: A57 (2012)
In 2009, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) established a longitudinal multi-center, multiple disease U.S. national registry (CARRAnet) for pediatric rheumatology with the intent of providing 60 participating clinical sites a new framework to drive observational clinical research and evidence-based care. CARRAnet seeks to enroll up to 20,000 subjects with childhood-onset rheumatic disease and twice yearly follow-up. We report baseline characteristics of the initial 6-month enrollment cohort; disease-specific results are reported separately.
Enrollment commenced 5/29/2010 with data available through 12/28/10. Inclusion criteria comprised 1 of 8 categories of defined rheumatic disease with onset before the 16th birthday in subjects <=21 years (localized scleroderma, juvenile dermatomyositis, juvenile idiopathic arthritis, juvenile primary fibromyalgia syndrome, SLE or mixed connective tissue disease, sarcoidosis, systemic sclerosis, and vasculitis). A common baseline data set and 1 disease-specific data set was completed on each participant by interview and chart review. Data cleaning and analysis employed Microsoft Excel and Access (Microsoft Corp), SAS (SAS Institute), and R (R Foundation for Statistical Computing).
1638 subjects were enrolled from 27 centers throughout the US. The analysis cohort reflected 1371 subjects, predominantly JIA; 63 variables were collected for the shared baseline form with summary statistics presented in the figures. The population reported overall good to excellent health by patient and physician report: 96% with mean HRQOL good to excellent; physician mean global assessment of disease activity (PGAS) 1.6 (0-10 scale). PGAS correlated with subject reports (CHAQ, subject global, subject pain scores – Pearson corr 0.33, 0.39, 0.42 respectively). Medication use was prevalent, including 74% ever on steroids, 41% ever on biologics, and 31% currently on biologics. Growth was within normal on average, but exhibited wide deviation (-5.3>weight Z > 4.7, -19.7>height Z>9.4). A similarly wide range was seen on both objective and subjective measures, identifying probable subpopulations with high disease activities.
The initial CARRAnet cohort reflects predominantly low disease activity with favorable self-reports. This is not a population study and issues of enrollment bias require further investigation. Despite the overall well-being of the population, the high use of steroids, biologics, and DMARDs, along with significant subpopulations concerning for high disease activity, are important areas of future focus.
Marc D. Natter: None; Jane R. Winsor: None; Kathleen A. Fox: None; Norman T. Ilowite: None; Kenneth D. Mandl: None; Kelly L. Mieszkalski: None; Christy I. Sandborg: None; John S. Sundy: None; Carol A. Wallace: None; Laura E. Schanberg: None; CARRAnet Investigators Group: None.
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Natter, M.D., Winsor, J.R., Fox, K.A. et al. The childhood arthritis & rheumatology research alliance network registry: demographics and characteristics of the initial 6-month cohort. Pediatr Rheumatol 10 (Suppl 1), A57 (2012). https://doi.org/10.1186/1546-0096-10-S1-A57
- Juvenile Idiopathic Arthritis
- Connective Tissue Disease
- Mixed Connective Tissue Disease