Table 2 Demographic and clinical characteristics: Individuals with CG discussed during interviews
Demographic characteristics | Total (N = 17) | Adults with CG | Children (under 18 years) with CG | ||||||
|---|---|---|---|---|---|---|---|---|---|
Total adults (n = 7) | Self-reported (n = 5) | Caregiver-reported (n = 2) | Total pediatric (n = 10) |  < 2 years (n = 2) | 2–6 years (n = 5) | 7–12 years (n = 3) | 13–17 years (n = 0) | ||
Age (years) | |||||||||
Mean (SD) | 15.2 (16.57) | 31.6 (13.76) | 28.6 (4.98) | 39.0 (29.70) | 3.8 (3.05) | 1.0 (0.00) | 2.4 (0.89) | 8.0 (1.00) | – |
Median | 8.0 | 27.0 | 27.0 | 39.0 | 2.0 | 1.0 | 2.0 | 8.0 | – |
Min, max | 1, 60 | 18, 60 | 25, 37 | 18, 60 | 1, 9 | 1, 1 | 2, 4 | 7, 9 | – |
Race, n (%) | Â | Â | Â | Â | Â | Â | Â | Â | Â |
White | 17 (100%) | 7 (100%) | 5 (100%) | 2 (100%) | 10 (100%) | 2 (100%) | 5 (100%) | 3 (100%) | – |
Ethnicity, n (%) | |||||||||
Not Hispanic/Latino | 17 (100%) | 7 (100%) | 5 (100%) | 2 (100%) | 10 (100%) | 2 (100%) | 5 (100%) | 3 (100%) | – |
Gender, n (%) | |||||||||
Female | 9 (52.9%) | 3 (42.9%) | 2 (40.0%) | 1 (50.0%) | 6 (60.0%) | 1 (50.0%) | 2 (40.0%) | 3 (100%) | – |
Male | 7 (41.2%) | 3 (42.9%) | 2 (40.0%) | 1 (50.0%) | 4 (40.0%) | 1 (50.0%) | 3 (60.0%) | 0 (0%) | – |
Prefer not to answer | 1 (5.9%) | 1 (14.3%) | 1 (20.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | – |
CG diagnosis via newborn screening, n (%) | |||||||||
n | 12 | 2 | – | 2 | 10 | 2 | 5 | 3 | – |
Yes | 11 (91.7%) | 1 (50.0%) | – | 1 (50.0%) | 10 (100%) | 2 (100%) | 5 (100%) | 3 (100%) | – |
No | 1 (8.3%) | 1 (50.0%) | – | 1 (50.0%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | – |