Table 1.
Demographic characteristics of Fabry disease survey participants, all and by sex
| Characteristic | All (n = 367) | Male (n = 120) | Female (n = 245) | |||
|---|---|---|---|---|---|---|
| n | % | n | % | n | % | |
| Age group, years | ||||||
| 18–40 | 126 | 34.3 | 40 | 33.3 | 84 | 34.3 |
| 41–60 | 195 | 53.1 | 72 | 60.0 | 123 | 50.2 |
| 61–80 | 46 | 12.5 | 8 | 6.7 | 38 | 15.5 |
| Country of residence | ||||||
| USA | 200 | 54.5 | 57 | 47.5 | 142 | 58.0 |
| Canada | 47 | 12.8 | 19 | 15.8 | 28 | 11.4 |
| Othera | 120 | 32.7 | 44 | 36.7 | 75 | 30.6 |
| Diagnosis confirmed by genetic testing | ||||||
| Yes | 348 | 94.8 | 114 | 95.0 | 233 | 95.1 |
| No | 5 | 1.4 | 2 | 1.7 | 2 | 0.8 |
| Not sure | 14 | 3.8 | 4 | 3.3 | 10 | 4.1 |
| Time since diagnosis, months | ||||||
| < 12 | 29 | 7.9 | 4 | 3.3 | 25 | 10.2 |
| 12–24 | 18 | 4.9 | 4 | 3.3 | 14 | 5.7 |
| > 24 | 320 | 87.2 | 112 | 93.3 | 206 | 84.1 |
| Current ERT use | ||||||
| Yes | 280 | 76.3 | 105 | 87.5 | 174 | 71.0 |
| No, never tried it | 66 | 18.0 | 7 | 5.8 | 58 | 23.7 |
| No, tried it, no longer on it | 18 | 4.9 | 7 | 5.8 | 11 | 4.5 |
| Not sure | 3 | 0.8 | 1 | 0.8 | 2 | 0.8 |
Two participants who preferred not to indicate their sex were not included in the per-sex analysis
ERT enzyme replacement therapy
aOther includes France (n = 1), Germany (n = 1), Italy (n = 1), the Netherlands (n = 1), Poland (n = 18), Portugal (n = 12), Russia (n = 1), Spain (n = 1), Turkey (n = 2), the United Kingdom (n = 43) and other countries not listed in the survey (n = 39)