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Table 2 Demographic data of the study cohort (n = 36)

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
  1. n/a not available
  2. aParticipation in previous clinical trials was equated with the number of participants answering the question: “For participants in previous / current studies: My willingness to persuade others (friends, family, patients) to participate in a clinical study is ..”