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Erschienen in: Pediatric Rheumatology 1/2012

Open Access 01.07.2012 | Oral presentation

The childhood arthritis & rheumatology research alliance network registry: demographics and characteristics of the initial 6-month cohort

verfasst von: Marc D Natter, Jane R Winsor, Kathleen A Fox, Norman T Ilowite, Kenneth D Mandl, Kelly L Mieszkalski, Christy I Sandborg, John S Sundy, Carol A Wallace, Laura E Schanberg, CARRAnet Investigators Group

Erschienen in: Pediatric Rheumatology | Sonderheft 1/2012

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Purpose

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.

Methods

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).

Results

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.
Table 1
Summary characteristics of CARRAnet initial cohort
Demographic measures
N (%)
Total participants studied
1371
Female gender
1024 (75%)
White/caucasian
1187 (87%)
Age at onset of symptoms, mean in years
7.2
Age at baseline visit, mean in years
11.8
Black or African American
127 (9%)
Asian
45 (3%)
American Indian or Alaska Native
30 (2%)
Native Hawaiian or Pacific Islander
9 (<1%)
Hispanic ethnicity
150 (11%)
Primary rheuamtic diagnosis
 
Juveline idiopathic arthritis
1051 (77%)
Juveline dematophyositis
109 (8%)
Systemic lupus erythematosus
100 (7%)
Localized scleroderma
43 (3%)
Mixed connective tissue disease
23 (2%)
Vasculitis
23 (2%)
Systemic sclerosis
9 (<1%)
Sarcoidosis
8 (<1%)
Juveline primary fibromyalgia syndrome
6 (<1%)
Growth parameters
Mean & (Range)
Weight Z-score
0.28 (-5.3 – 4.7)
Height Z-score
-0.14 (-19.7 – 9.4)
BMI Z-score
0.38 (-5.0 – 4.1)
Assessments (scale: best -> worst)
Mean & (Range)
Physician global assess disease activity (0 – 10)
1.6 (0 – 10)
Subject global assess disease activity (0 – 10)
2.3 (0 – 10)
Subject pain score (0 – 10)
2.4 (0 – 10)
CHAQ (0 – 3)
0.33 (0 – 3)
HRQOL – Good, very good, excellent (%)
96%
HRQOL – Very poor, poor (%)
3%
Family history (first degree relative) of
N (%)
Psoriasis
82 (6%)
Rheumatoid arthritis
71 (5%)
Autoimmune throiditis
62 (5%)
Fibromyalgia
61 (4%)
Juvenile idiopathic arthritis
55 (4%)
Diabetes type I
35 (3%)
Inflammatory bowel disease
31 (2%)
Systemic lupus erthematosus
28 (2%)
Spondyloarthritis or ankyl. spondylitis
16 (1%)
Multiple sclerosis
13 (1%)
Celiac disease
10 (1%)
Uveitis
5 (<1%)
Medication use
N (%)
Steroids (ever)
1010 (74%)
Steroids (longterm daily, ever)
644 (47%)
Steroids (IV pulse, ever)
212 (15%)
Steroids (IA, ever)
529 (39%)
Biologics (ever)
560 (41%)
Biologics (current)
429 (31%)
TNF-α Blockers (current)
338 (25%)
DMARDs (ever)
1107 (81%)
DMARDs (current)
1021 (75%)
Methotrexate (current)
620 (45%)
NSAIDs (current)
625 (46%)
Opioids (current)
17 (1%)

Conclusion

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.

Disclosure

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.
This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://​creativecommons.​org/​licenses/​by/​2.​0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Metadaten
Titel
The childhood arthritis & rheumatology research alliance network registry: demographics and characteristics of the initial 6-month cohort
verfasst von
Marc D Natter
Jane R Winsor
Kathleen A Fox
Norman T Ilowite
Kenneth D Mandl
Kelly L Mieszkalski
Christy I Sandborg
John S Sundy
Carol A Wallace
Laura E Schanberg
CARRAnet Investigators Group
Publikationsdatum
01.07.2012
Verlag
BioMed Central
Erschienen in
Pediatric Rheumatology / Ausgabe Sonderheft 1/2012
Elektronische ISSN: 1546-0096
DOI
https://doi.org/10.1186/1546-0096-10-S1-A57

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