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Table 2 Clinical Characteristics of Patients in the Global aHUS Registry

From: The global aHUS registry: methodology and initial patient characteristics

Characteristic Pediatric patients (n = 201)a Adult patients (n = 315)a Total (N = 516)a
Age at initial symptoms, years
n 198 310 508
 Mean (SD) 4.1 (3.9) 33.6 (18.3) 22.1 (20.4)
 Median (range) 2.9 (0.0–16.3) 31.1 (0.1–81.8) 19.2 (0.0–81.8)
 Age categories, n (%)
   <2 87 (43.9) 12 (3.9) 99 (19.5)
  2 to <5 40 (20.2) 9 (2.9) 49 (9.6)
  5 to <12 60 (30.3) 14 (4.5) 74 (14.6)
  12 to <18 11 (5.6) 11 (3.5) 22 (4.3)
  18 to <30 95 (30.6) 95 (18.7)
  30 to <40 71 (22.9) 71 (14.0)
  40 to <50 34 (11.0) 34 (6.7)
   ≥50 64 (20.6) 64 (12.6)
Age at diagnosis, years
n 201 313 514
 Mean (SD) 4.3 (4.0) 34.5 (17.9) 22.7 (20.5)
 Median (range) 3.1 (0.0–16.3) 31.5 (0.1–81.8) 19.7 (0.0–81.8)
 Age categories, n (%)
   <2 86 (42.8) 10 (3.2) 96 (18.7)
  2 to <5 39 (19.4) 6 (1.9) 45 (8.8)
  5 to <12 63 (31.3) 11 (3.5) 74 (14.4)
  12 to <18 13 (6.5) 14 (4.5) 27 (5.3)
  18 to <30 98 (31.3) 98 (19.1)
  30 to <40 71 (22.7) 71 (13.8)
  40 to <50 35 (11.2) 35 (6.8)
   ≥50 68 (21.7) 68 (13.2)
Disease duration from diagnosis to enrollment, years
n 201 313 514
 Mean (SD) 4.0 (4.1) 5.2 (7.8) 4.7 (6.6)
 Median (range) 2.4 (0.0–17.1) 1.6 (0.0–50.6) 1.9 (0.0–50.6)
Family history of aHUS, n (%) 41 (20.4) 58 (18.4) 99 (19.2)
History of PE/PI, n (%) 107 (53.2) 204 (64.8) 311 (60.3)
History of dialysis, n (%) 107 (53.2) 200 (63.5) 307 (59.5)
History of kidney transplantation, n (%) 25 (12.4) 76 (24.1) 101 (19.6)
History of eculizumab use prior to enrollment, n (%) 106 (52.7) 168 (53.3) 274 (53.1)
  1. aHUS atypical hemolytic uremic syndrome, PE/PI plasma exchange/plasma infusion, SD standard deviation
  2. aFor each parameter, percentages were calculated based on the number of patients with non-missing observations in each group