Table 1.
Adult IMD patient characteristics.
| Patient characteristic (n = 1,426) | Frequency (number) | Percentage (%) | |
|---|---|---|---|
| Gender | |||
| Female | 634 | 45% | |
| Male | 697 | 49% | |
| Not reported | 95 | 7% | |
| Ethnicity | |||
| Asian | 414 | 29% | |
| European | 351 | 25% | |
| Middle Eastern/Arab | 161 | 11% | |
| North-American | 70 | 5% | |
| South American (incl Hispanic and Latino) | 27 | 2% | |
| African and African American | 25 | 2% | |
| Not reported | 378 | 27% | |
| Age (years) | Median onset of symptoms* | 20 (range 0-−80 years) | |
| Median age of diagnosis | 35 (range 16-−90 years) | ||
| Average diagnostic delayΔ | 15 years | ||
| Multiple system involvement (2 or more organ | |||
| systems involved; % of all cases) | |||
| Yes | 674 | 47% | |
| No | 752 | 53% | |
*30% missing data. ΔThe number of years between age at onset first symptom presentation until diagnosis.