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Table 1 Demographic information for the patients with JDM in the CARRA Legacy Registry

From: Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry

 Comparison of Global Assessment Scores
VariableOverall Cohort (N = 563)Concordant gVAS: (N = 344)Discordant gVAS: PF gVAS > MD gVAS (N = 149)Discordant gVAS: MD gVAS > PF gVAS (N = 70)
Current Age, years Ϯ10.6 (6.9–14.7)10.8 (6.9–14.7)10.2 (6.7–14.2)10.4 (7.8–14.8)
Age at Onset, years Ϯ5.5 (3.6–9.3)5.5 (3.6–9.2)5.3 (3.6–9.2)5.8 (3.6–10.0)
Disease Duration, years Ϯ3.1 (1.3–6.4)3.4 (1.7–6.0)2.9 (1.3–6.8)2.8 (1.0–7.0)
Gender, no. (%)
 Male160 (28)99 (29)43 (29)18 (26)
 Female403 (72)245 (71)106 (71)52 (74)
Race, no. (%)
 Caucasian442 (79)280 (81)110 (74)52 (74)
 Black68 (12)38 (11)20 (13)10 (14)
 Asian20 (4)11 (3)7 (5)2 (3)
 Other33 (6)15 (5)12 (8)6 (9)
Ethnicity, no. (%)
 Non-Hispanic471 (84)287 (83)126 (85)58 (83)
 Hispanic92 (16)7 (17)23 (15)12 (17)
Income Level, no. (%)
  < $50,000162 (36)90 (33)53 (44)19 (34)
  > $50,000283 (64)180 (67)66 (56)37 (66)
CMAS, no. (%)
  < 48122 (37)74 (35)29 (38)19 (44)
  > 48211 (63)139 (65)48 (62)24 (56)
Weakness, no. (%) a
 None or Mild494 (89)311 (92)130 (90)53 (76)
 Moderate or Severe60 (11)28 (8)15 (10)17 (24)
Muscle Enzyme, no. (%) a
 Abnormal97 (18)48 (15)24 (17)25 (36)
 Normal446 (82)284 (85)117 (83)45 (64)
JDM Rash, no. (%) a
 Yes289 (52)160 (47)68 (47)61 (87)
 No265 (48)180 (53)76 (53)9 (13)
Nailfold Changes, no. (%) a
 Yes227 (42)126 (38)52 (37)49 (72)
 No313 (58)206 (62)88 (63)19 (28)
Calcinosis, no. (%) a
 Yes53 (10)18 (5)21 (15)14 (20)
 No487 (90)310 (95)121 (85)56 (80)
GI-Cardiac, no. (%)
 Yes17 (3)6 (2)7 (5)4 (6)
 No546 (97)338 (98)142 (95)66 (94)
Joint Involvement, no. (%) a
 Yes72 (13)34 (10)20 (14)18 (36)
 No481 (87)306 (90)124 (86)51 (64)
Pulse Steroids Use, no. (%) a
 Yes69 (14)32 (10)20 (15)17 (27)
 No441 (86)283 (90)113 (85)45 (73)
Oral Steroids Use, no. (%) a
 Yes261 (50)133 (42)84 (62)44 (69)
 No258 (50)187 (58)51 (38)20 (31)
CHAQ Ϯ0 (0.0–0.63)0 (0.0–0.38)0.38 (0.0–1.09)0.13 (0.0–0.88)
CMAS Strength50 (44–52)51 (45–52)49 (45–52)48 (37–52)
Pain Score1 (0–3)0 (0–2)2 (0–5)0 (0–2)
QoL Score a
 Excellent129 (23)109 (32)5 (3)15 (21)
 Good or Very Good395 (71)217 (64)129 (88)49 (70)
 Poor31 (6)12 (4)13 (9)6 (9)
  1. a Significant univariate association. Discordance defined as at least a 2-point difference in gVAS
  2. Ϯ Data presented as median (interquartile range)