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Table 2 Characteristics of the patients enrolled in the CARRA Registry in the first 12 months of operation. All values are taken from the enrollment visit. Columns 3–5 are not mutually exclusive and patients may appear more than once

From: The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months

  Frequency (%) or Median (25–75%)
Characteristic All Participants (N = 1,192) Recent Diagnosisa
(N = 295)
New MTX Useb
(N = 141)
New Biologic Useb
(N = 147)
Age at enrollment (years) 12.4 (7.9–15.7) 10.2 (4.8–14.1) 11.5 (6.8–14.3) 12.7 (7.2–16)
Female 887 (74%) 201 (68%) 109 (77%) 105 (71%)
Race/Ethnicity:
 White 962 (81%) 240 (81%) 112 (79%) 115 (78%)
 Black/African-American 58 (5%) 15 (5%) 5 (4%) 8 (5%)
 Asian 48 (4%) 15 (5%) 8 (6%) 4 (3%)
 Hispanic/Latino 135 (11%) 30 (10%) 14 (10%) 20 (14%)
 Middle Eastern/North African 5 (0.4%) 3 (1%) 1 (0.7%) 1 (0.7%)
 Native American, American Indian, Alaskan Native 15 (1%) 2 (0.7%) 1 (0.7%) 2 (1%)
 Native Hawaiian or Other Pacific Islander 12 (1%) 4 (1%) 2 (1%) 1 (0.7%)
Private health insurance 890 (75%) 217 (74%) 101 (72%) 112 (76%)
Disease duration (years) 2.6 (0.5–6.2) 0.1 (0–0.3) 1.1 (0–4) 2.2 (0.5–6.1)
ILAR category:
 Oligoarthritis, persistent 152 (13%) 90 (31%) 28 (20%) 16 (11%)
 Oligoarthritis, extended 102 (9%) 6 (2%) 5 (4%) 11 (7%)
 Polyarthritis, RF- 510 (43%) 88 (30%) 66 (47%) 62 (42%)
 Polyarthritis, RF+ 101 (8%) 18 (6%) 14 (10%) 14 (10%)
 Psoriatic arthritis 57 (5%) 20 (7%) 9 (6%) 9 (6%)
 Enthesitis related arthritis 104 (9%) 44 (15%) 11 (8%) 20 (14%)
 Systemic arthritis 154 (13%) 26 (9%) 6 (4%) 13 (9%)
 Undifferentiated arthritis 12 (1%) 3 (1%) 2 (1%) 2 (1%)
ANA+ 457/1041 (38%) 107/255 (36%) 64/128 (45%) 64/134 (44%)
RF+ 111/907 (9%) 24/213 (8%) 17/107 (12%) 15/118 (10%)
Anti-CCP+ 91/585 (8%) 20/129 (7%) 17/74 (12%) 14/73 (10%)
HLA-B27+ 98/608 (8%) 32/179 (11%) 15/75 (11%) 16/83 (11%)
Polyarthritis course 895 (75%) 151 (51%) 100 (71%) 107 (73%)
Uveitis, ever 94 (8%) 3 (1%) 8 (6%) 19 (13%)
Number of active joints 1 (0–3) 2 (1–6) 3 (1–6) 3 (1–5.75)
Physician global assessment 1.5 (0–3.0) 3 (1.5–5) 3 (1.75–4.25) 3 (2–5)
CHAQ score 0.125 (0–0.625) 0.375 (0–0.875) 0.25 (0–1) 0.5 (0–1)
ESR 8 (5–17) 9 (5–28) 9 (6–23) 9 (5–27)
CRP 0.6 (0.2–1.7) 0.8 (0.3–1.7) 1.0 (0.5–3.0) 0.8 (0.5–2.6)
  1. Sixty-three participants were recently diagnosed and started methotrexate on the day of enrollment. Thirty-seven participants were recently diagnosed and started a biologic agent on the day of enrollment. Eleven participants were recently diagnosed and started both methotrexate and a biologic agent on the day of enrollment. Twenty-three participants total newly started both methotrexate and a biologic agent on the day of enrollment. Participants could report more than 1 race/ethnicity
  2. ILAR International League Against Rheumatism, RF rheumatoid factor, ANA antinuclear antibody, CCP cyclic citrullinated peptide, CHAQ Childhood Health Assessment Questionnaire, ESR erythrocyte sedimentation rate, CRP C-reactive protein
  3. aWithin 6 months of diagnosis
  4. bNew medication was prescribed on the day of enrollment in the Registry