Table 1.
Baseline demographics and disease characteristics
| Study participants recruited from the LUMINA-1 trial (n = 7) | Study participants recruited by the IFOPA (n = 13) | Total study participants (N = 20) | |
|---|---|---|---|
| Age, years, mean (range) | 32.9 (21–52) | 37.6 (19–65) | |
| Race, n (%) | |||
| White | 5 (71.4) | 11 (84.6) | 16 (80.0) |
| White/native | 0 | 1 (7.7) | 1 (5.0) |
| Not available | 2 (28.5) | 1 (7.7) | 3 (15.0) |
| Sex, n (%) | |||
| Female | 4 (57.1) | 8 (61.5) | 12 (60.0) |
| Male | 3 (42.8) | 5 (38.5) | 8 (40.0) |
| Education, n (%) | |||
| High school graduate | 1 (14.2) | 3 (23.1) | 4 (20.0) |
| Bachelor’s degree or higher | 4 (57.1) | 9 (69.2) | 13 (65.0) |
| Employment, n (%) | |||
| Full time | 2 (28.5) | 2 (15.3) | 4 (20.0) |
| Retired | 2 (28.5) | 0 | 2 (10.0) |
| Time since FOP diagnosis, years, n (%) | |||
| ≤ 5 | 0 | 0 | 0 |
| 6–10 | 1 (14.2) | 0 | 1 (5.0) |
| > 10 | 6 (85.7) | 13 (100.0) | 19 (95.0) |
| Time symptoms were experienced before diagnosis, years, n (%) | |||
| 0–5 | 5 (71.4) | 11 (84.6) | 16 (80.0) |
| ≥ 6 | 2 (28.5) | 1 (7.7) | 3 (15.0) |
| Not reported | 0 | 1 (7.7) | 1 (5.0) |
| Symptom medications, n (%) | |||
| Glucocorticoids | 5 (71.4) | 7 (53.8) | 12 (60.0) |
| Nonsteroidal anti-inflammatories | 4 (57.1) | 8 (61.5) | 12 (60.0) |
| Cannabinoids | 3 (42.8) | 3 (23.1) | 6 (30.0) |
| Conditions/comorbidities, n (%) | |||
| Anxiety | 3 (42.8) | 5 (38.5) | 8 (40.0) |
| Dental issues | 2 (28.5) | 3 (23.1) | 5 (25.0) |
| Depression | 1 (14.2) | 5 (38.5) | 6 (30.0) |
| Hair loss | 4 (57.1) | 7 (53.8) | 11 (55.0) |
| Hearing loss | 3 (42.8) | 6 (46.2) | 9 (45.0) |
| Breathing issues | 1 (14.2) | 5 (38.5) | 6 (30.0) |
IFOPA International Fibrodysplasia Ossificans Progressiva Association, FOP fibrodysplasia ossificans progressiva, N/A not applicable