Table 1 Demographic and clinical characteristics: Individuals with CG discussed in surveys
Demographic Characteristics | Total (N = 49) | Adults with CG | Child (under 18 year) with CG | ||||||
|---|---|---|---|---|---|---|---|---|---|
Total Adults (n = 13) | Self-Reported (n = 9) | Caregiver-Reported (n = 4) | Total Pediatric (n = 36) |  < 2 years (n = 5) | 2–6 years (n = 11) | 7–12 years (n = 9) | 13–17 years (n = 11) | ||
Age (Years) | |||||||||
Mean (SD) | 14.2 (13.32) | 32.2 (12.02) | 33.1 (8.05) | 30.3 (19.94) | 7.7 (5.39) | 1.0 (0.00) | 3.2 (1.17) | 8.6 (1.81) | 14.5 (1.44) |
Median | 12.0 | 29.0 | 30.0 | 21.5 | 7.0 | 1.0 | 3.0 | 8.0 | 14.0 |
Min, Max | 1, 60 | 18, 60 | 25, 46 | 18, 60 | 1, 17 | 1, 1 | 2, 5 | 7, 12 | 13, 17 |
Race, n (%) | |||||||||
White | 48 (98.0%) | 12 (92.3%) | 8 (88.9%) | 4 (100%) | 36 (100%) | 5 (100%) | 11 (100%) | 9 (100%) | 11 (100%) |
Black/ African American | 1 (2.0%) | 1 (7.7%) | 1 (11.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) |
Ethnicity, n (%) | |||||||||
Hispanic/ Latino | 3 (6.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 3 (8.3%) | 0 (0%) | 1 (9.1%) | 1 (11.1%) | 1 (9.1%) |
Not Hispanic/ Latino | 46 (93.9%) | 13 (100%) | 9 (100%) | 4 (100%) | 33 (91.7%) | 5 (100%) | 10 (90.9%) | 8 (88.9%) | 10 (90.9%) |
Gender, n (%) | |||||||||
Female | 26 (53.1%) | 6 (46.2%) | 4 (44.4%) | 2 (50.0%) | 20 (55.6%) | 2 (40.0%) | 6 (54.5%) | 6 (66.7%) | 6 (54.5%) |
Male | 22 (44.9%) | 6 (46.2%) | 4 (44.4%) | 2 (50.0%) | 16 (44.4%) | 3 (60.0%) | 5 (45.5%) | 3 (33.3%) | 5 (45.5%) |
Prefer not to answer | 1 (2.0%) | 1 (7.7%) | 1 (11.1%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) |
CG diagnosis via newborn screening, n (%) | |||||||||
n | 40 | 4 | – | 4 | 36 | 5 | 11 | 9 | 11 |
Yes | 35 (87.5%) | 2 (50.0%) | – | 2 (50.0%) | 33 (91.7%) | 5 (100%) | 10 (90.9%) | 8 (88.9%) | 10 (90.9%) |
No | 4 (10.0%) | 1 (25.0%) | – | 1 (25.0%) | 3 (8.3%) | 0 (0%) | 1 (9.1%) | 1(11.1%) | 1 (9.1%) |
I do not know | 1 (2.5%) | 1 (25.0%) | – | 1 (25.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) |