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Table 1 Summary characteristics of CARRAnet initial cohort

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