Table 2.
Demographics by German centre
| Characteristic | Charité, Universitätsmedizin Berlin | HZRM Haemophilie Zentrum Rhein Main GmbH | Universitätsklinik Mainz | Hals‐Nasen‐Ohrenklinik und Poliklinik | Universitätsklinikum Essen | Klinikum der Johann‐Wolfgang Goethe Universität | Universitätsklinikum Carl Gustav Carus |
|---|---|---|---|---|---|---|---|
| No. of patients | 37 | 25 | 11 | 7 | 6 | 4 | 3 |
| Gender, n (%) | |||||||
| Female | 20 (54.1) | 17 (68.0) | 9 (81.8) | 5 (71.4) | 4 (66.7) | 1 (25.0) | 2 (66.7) |
| Male | 17 (45.9) | 8 (32.0) | 2 (18.2) | 2 (28.6) | 2 (33.3) | 3 (75.0) | 1 (33.3) |
| HAE diagnosis, n (%) | |||||||
| HAE type I | 35 (94.6) | 24 (96.0) | 10 (90.9) | 5 (71.4) | 4 (66.7) | 3 (75.0) | 2 (66.7) |
| HAE type II | 2 (5.4) | 1 (4.0) | 1 (9.1) | 2 (28.6) | 2 (33.3) | 1 (25.0) | 1 (33.3) |
| Age at IOS enrolment, years | |||||||
| n (missing) | 37 (0) | 25 (0) | 11 (0) | 7 (0) | 6 (0) | 4 (0) | 3 (0) |
| Median (IQR) | 37.7 (25.7–55.1) | 49.5 (30.7–54.6) | 40.7 (24.2–49.6) | 45.5 (31.8–70.3) | 55.6 (44.9–72.0) | 53.1 (38.8–63.3) | 43.8 (37.4–75.9) |
| Age at first symptoms, years | |||||||
| n (missing) | 34 (3) | 17 (8) | 11 (0) | 6 (1) | 5 (1) | 4 (0) | 2 (1) |
| Median (IQR) | 11.0 (8.0–16.0) | 7.0 (3.0–19.0) | 15.0 (8.0–22.0) | 18.0 (9.0–43.0) | 19.0 (10.0–40.0) | 8.0 (7.5–14.0) | 41.5 (11.0–72.0) |
| Age at diagnosis, years | |||||||
| n (missing) | 36 (1) | 22 (3) | 11 (0) | 7 (0) | 6 (0) | 4 (0) | 3 (0) |
| Median (IQR) | 18.1 (9.8–29.8) | 19.5 (11.5–36.5) | 18.5 (7.6–30.3) | 36.3 (26.9–68.5) | 37.5 (33.8–45.9) | 24.7 (12.4–37.9) | 43.4 (33.8–72.5) |
| Delay in diagnosis, years | |||||||
| n (missing) | 34 (3) | 17 (8) | 11 (0) | 6 (1) | 5 (1) | 4 (0) | 2 (1) |
| Median (IQR) | 3.4 (0.0–13.8) | 6.8 (0.5–15.5) | 0.5 (0.0–8.3) | 7.6 (1.7–27.3) | 23.8 (7.0–24.2) | 15.9 (4.9–23.9) | 11.6 (0.5–22.8) |
| Delay in diagnosis, years, n (%) | |||||||
| <0 | 2 (5.9) | 3 (17.6) | 1 (9.1) | 0 | 0 | 0 | 0 |
| 0–1 | 11 (32.4) | 3 (17.6) | 5 (45.5) | 1 (16.7) | 0 | 0 | 1 (50.0) |
| >1 | 21 (61.8) | 11 (64.7) | 5 (45.5) | 5 (83.3) | 5 (100.0) | 4 (100.0) | 1 (50.0) |
HAE, hereditary angioedema; IOS, Icatibant Outcome Survey; IQR, interquartile range.