From: Profiling trial burden and patients’ attitudes to improve clinical research in epidermolysis bullosa
Category | Patients (n) | Percentage (%) |
---|---|---|
Sex | ||
Female | 19 | 52.8 |
Male | 15 | 41.7 |
n/a | 2 | 5.5 |
Age | ||
Mean age | 25.7 years (range 5–80) | |
< 18a | 12 | 33.3 |
≥ 18a | 19 | 52.8 |
Not specified | 5 | 13.9 |
Country of origin | ||
Austria | 17 | 47.2 |
Germany | 10 | 27.8 |
Italy | 5 | 13.9 |
n/a | 4 | 11.1 |
EB Subtypes | ||
Mild | ||
EBS | 12 | 33.3 |
Acral peeling syndrome | 1 | 2.8 |
DDEB | 1 | 2.8 |
Severe | ||
JEB | 3 | 8.3 |
RDEB | 13 | 36.1 |
n/a | 6 | 16.7 |
Participation in previous clinical trialsa | ||
Yesa | 27a | 75.0 |
No | 9 | 25.0 |