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. Author manuscript; available in PMC: 2021 Dec 1.
Published in final edited form as: J Pediatr. 2020 Jul 11;227:81–86.e4. doi: 10.1016/j.jpeds.2020.07.031

Table I.

Patient characteristics at study entry and during follow-up

Characteristic Statistic Baseline Year 1 Year 2 Year 3 Year 4 Year 5 Year 6 Year 7 Year 8 Year 9
Participants N 350 229 179 151 102 73 56 47 37 18
Visits per participant Mean (SD) 3.55 (2.48)
Median (IQR) 3 (4)
Min, max 1,11
Phenotype SZ 32 (10.1%)
ZZ 286 (89.9%)
Age (years) N 350 229 179 151 102 73 56 47 37 18
Mean (SD) 6.05 (5.49) 6.82 (5.09) 7.31 (4.87) 8.91 (4.99) 9.83 (4.85) 9.99 (4.21) 10.86 (4.04) 11.52 (3.75) 12.96 (3.97) 13.24 (4.24)
Median (IQR) 4.23 (7.98) 5.59 (7.38) 5.93 (6.38) 7.7 (7.07) 8.64 (7.27) 9.04 (5.3) 9.94 (5.58) 10.72 (4.49) 12.79 (4.76) 12.13 (4.25)
Min, max 0.12, 24.87 0.96, 22.48 1.77, 22.85 2.78, 23.9 4.05, 24.96 4.95, 25.97 6.06, 24.54 7.35, 25.79 8.25, 26.88 9.77, 28.07
Age group (years) 0-<5 191 (54.6%) 107 (46.7%) 77 (43%) 42 (27.8%) 13 (12.7%) 1 (1.4%)
5-<10 83 (23.7%) 70 (30.6%) 60 (33.5%) 56 (37.1%) 47 (46.1%) 43 (58.9%) 28 (50%) 20 (42.6%) 11 (29.7%) 2 (11.1%)
10-<15 43 (12.3%) 31 (13.5%) 25 (14%) 31 (20.5%) 26 (25.5%) 23 (31.5%) 21 (37.5%) 20 (42.6%) 18 (48.6%) 13 (72.2%)
15-<20 28 (8%) 17 (7.4%) 13 (7.3%) 17 (11.3%) 12 (11.8%) 4 (5.5%) 5 (8.9%) 5 (10.6%) 6 (16.2%) 2 (11.1%)
20-<25 5 (1.4%) 4 (1.7%) 4 (2.2%) 5 (3.3%) 4 (3.9%) 1 (1.4%) 2 (3.6%) 1 (2.1%) 1 (2.7%)
≥25 1 (1.4%) 1 (2.1%) 1 (2.7%) 1 (5.6%)
Ethnicity Hispanic 21 (6.1%) 15 (6.6%) 13 (7.3%) 9 (6%) 8 (7.8%) 5 (6.8%) 3 (5.4%) 4 (8.5%) 3 (8.1%) 3 (16.7%)
Non-Hispanic 324 (93.9%) 212 (93.4%) 165 (92.%) 141 (94%) 94 (92.2%) 68 (93.2%) 53 (94.6%) 43 (91.5%) 34 (91.9%) 15 (83.3%)
Sex Male 211 (60.5%) 144 (62.9%) 112 (62.6%) 86 (57%) 61 (59.8%) 39 (53.4%) 32 (57.1%) 22 (46.8%) 20 (54.1%) 11 (61.1%)
Female 138 (39.5%) 85 (37.1%) 67 (37.4%) 65 (43%) 41 (40.2%) 34 (46.6%) 24 (42.9%) 25 (53.2%) 17 (45.9%) 7 (38.9%)
Race White 322 (93.6%) 210 (92.5%) 167 (93.3%) 140 (92.7%) 96 (94.1%) 70 (95.9%) 52 (92.9%) 43 (91.5%) 34 (91.9%) 17 (94.4%)
Black 3 (0.9%) 3 (1.3%) 1 (0.6%) 1 (0.7%)
Other 19 (5.5%) 14 (6.2%) 11 (6.1%) 10 (6.6%) 6 (5.9%) 3 (4.1%) 4 (7.1%) 4 (8.5%) 3 (8.1%) 1 (5.6%)