Table 1 Patient Demographics in the Global aHUS Registry
From: The global aHUS registry: methodology and initial patient characteristics
Characteristic | Pediatric patientsa (n = 201) | Adult patientsa (n = 315) | Total (N = 516) |
|---|---|---|---|
Age at enrollment, years | |||
Mean (SD) | 8.2 (4.9) | 39.7 (15.4) | 27.4 (19.7) |
Median (range) | 8.3 (0.0–17.9) | 38.3 (18.0–81.8) | 24.3 (0.0–81.8) |
Age category at time of enrollment, n (%) | |||
<2 | 22 (10.9) | — | 22 (4.3) |
2 to <5 | 41 (20.4) | — | 41 (7.9) |
5 to <12 | 82 (40.8) | — | 82 (15.9) |
12 to <18 | 56 (27.9) | — | 56 (10.9) |
18 to <30 | — | 102 (32.4) | 102 (19.8) |
30 to <40 | — | 73 (23.2) | 73 (14.1) |
40 to <50 | — | 61 (19.4) | 61 (11.8) |
≥50 | — | 79 (25.1) | 79 (15.3) |
Female, n (%) | 81 (40.3) | 194 (61.6) | 275 (53.3) |
Race, n (%) | |||
Caucasian | 162 (80.6) | 285 (90.5) | 447 (86.6) |
Other | 27 (13.4) | 10 (3.2) | 37 (7.2) |
Black | 5 (2.5) | 17 (5.4) | 22 (4.3) |
Asian | 7 (3.5) | 3 (1.0) | 10 (1.9) |
Country at time of enrollment, n (%) | |||
United States | 31 (15.4) | 77 (24.4) | 108 (20.9) |
Germany | 32 (15.9) | 50 (15.9) | 82 (15.9) |
United Kingdom | 33 (16.4) | 33 (10.5) | 66 (12.8) |
Italy | 20 (10.0) | 45 (14.3) | 65 (12.6) |
Spain | 24 (11.9) | 13 (4.1) | 37 (7.2) |
France | 3 (1.5) | 25 (7.9) | 28 (5.4) |
Russia | 17 (8.5) | 10 (3.2) | 27 (5.2) |
Belgium | 5 (2.5) | 22 (7.0) | 27 (5.2) |
Australia | 2 (1.0) | 24 (7.6) | 26 (5.0) |
Israel | 18 (9.0) | 2 (0.6) | 20 (3.9) |
Austria | 1 (0.5) | 9 (2.9) | 10 (1.9) |
Canada | 6 (3.0) | 1 (0.3) | 7 (1.4) |
United Arab Emirates | 6 (3.0) | 0 (0.0) | 6 (1.2) |
Sweden | 3 (1.5) | 1 (0.3) | 4 (0.8) |
Switzerland | 0 (0.0) | 2 (0.6) | 2 (0.4) |
Finland | 0 (0.0) | 1 (0.3) | 1 (0.2) |
Year of enrollment | |||
2012 | 1 (0.5) | 20 (6.3) | 21 (4.1) |
2013 | 140 (69.7) | 189 (60.0) | 329 (63.8) |
2014b | 60 (29.9) | 106 (33.7) | 166 (32.2) |
Deceased, n (%)c | 1 (0.5) | 14 (4.4) | 15 (2.9) |