Table 1.
Sociodemographic and rare disease characteristics among 1218 participants in the U.S
| Characteristic | Frequency | Percent | M (SD) | Range |
|---|---|---|---|---|
| Age | 51.50 (14.56) | 18–89 | ||
| Duration of RD symptoms in years | 18.84 (16.49) | 0–75 | ||
| Years since RD diagnosis | 9.76 (11.46) | 0–70 | ||
| Number of RDs perparticipant | ||||
| 1 | 1058 | 87% | ||
| 2 | 130 | 11% | ||
| 3 | 22 | 2% | ||
| 4 | 4 | <1% | ||
| 5 | 4 | <1% | ||
| Gender | ||||
| Female | 935 | 77% | ||
| Male | 279 | 23% | ||
| Other | 4 | <1% | ||
| Income | ||||
| under $10,000 | 58 | 5% | ||
| $10,000–20,000 | 95 | 8% | ||
| $20,001–30,000 | 118 | 10% | ||
| $30,001–45,000 | 127 | 11% | ||
| $45,001–60,000 | 161 | 14% | ||
| $60,001–75,000 | 128 | 11% | ||
| $75,001–90,000 | 107 | 9% | ||
| $90,001 and above | 376 | 32% | ||
| Race/ethnicity | ||||
| American Indian orAlaska native | 11 | 1% | ||
| Asian | 23 | 2% | ||
| Black or African American | 13 | 1% | ||
| Hispanic or Latino/a | 31 | 3% | ||
| Native Hawaiian orPacific Islander | 2 | 6% | ||
| White | 1149 | 94% | ||
| Other | 31 | 3% | ||
Percentages do not add to 100 due to rounding