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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 ..”