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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)
  1. aHUS atypical hemolytic uremic syndrome, SD standard deviation
  2. aCategorized by age at enrollment in the Registry
  3. bThrough September 30, 2014
  4. cEach of these causes of death were reported in 1 patient: acute myeloid leukemia; Aspergillus infection; cardiomyopathy; continuous gastrointestinal bleeding; gastrointestinal perforation; liver metastases; malignant cardiac arrhythmias; protracted cardiogenic shock and ventricular tachycardia; renal failure in addition to aHUS and pancreatic cancer; respiratory arrest probably due to cytomegalovirus infection; respiratory failure due to pneumonia; respiratory failure secondary to bleomycin lung injury; serious infection leading to multiple organ failure; unknown; withdrawal from dialysis and prostate cancer