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Table 1 Demographics and characteristics of survey respondents

From: Cannabinoid use and effects in patients with epidermolysis bullosa: an international cross-sectional survey study

  Total cohort RDEB DDEB EBS JEB
Participants enrolled, n (%) 71 (100.0) 37 (52.1) 8 (11.3) 17 (23.9) 8 (11.3)
Participant role, n (%)
 Patient 43 (60.6) 18 (48.6) 6 (75.0) 13 (76.5) 5 (62.5)
 Parent/guardian/caregiver 28 (39.4) 19 (51.4) 2 (25.0) 4 (23.5) 3 (37.5)
Age, n (%)
 < 7 11 (15.5) 5 (13.5) 1 (12.5) 3 (17.6) 2 (25.0)
 7–12 8 (11.3) 7 (18.9) 1 (5.9)
 13–17 7 (9.9) 7 (18.9)
 18–25 10 (14.1) 7 (18.9) 3 (37.5)
 26–34 14 (19.7) 6 (16.2) 1 (12.5) 5 (29.4) 2 (25.0)
 > 34 21 (29.6) 5 (13.5) 3 (37.5) 8 (47.1) 4 (50.0)
Sex, n (%)
 Male 40 (56.3) 25 (67.6) 4 (50.0) 7 (41.2) 3 (37.5)
 Female 31 (43.7) 12 (32.4) 4 (50.0) 10 (58.8) 5 (62.5)
Geographic region, n (%)
 North America 62 (87.3) 33 (89.2) 7 (87.5) 16 (94.1) 5 (62.5)
 Europe 5 (7.0) 2 (5.4) 1 (12.5) 1 (5.9) 1 (12.5)
 Oceania 2 (2.8) 1 (2.7) 1 (12.5)
 Asia 1 (1.4) 1 (2.7)
 Africa 1 (1.4) 1 (12.5)
Self-reported severity, n (%)
 Very mild 1 (1.4) 1 (5.9)
 Mild 12 (16.9) 2 (5.4) 3 (37.5) 7 (41.2)
 Moderate 22 (31.0) 9 (24.3) 3 (37.5) 6 (35.3) 3 (37.5)
 Severe 24 (33.8) 18 (48.6) 1 (12.5) 3 (17.6) 2 (25.0)
 Very severe 12 (16.9) 8 (21.6) 1 (12.5) 3 (37.5)
CBM-use, n (%)
 Currently administering CBM 62 (87.3) 33 (89.2) 6 (75.0) 14 (82.4) 8 (100.0)
 Previously administered CBM 9 (12.7) 4 (10.8) 2 (25.0) 3 (17.6)
Age when CBM started, median (IQR) 19 (14.0–26.0) 16 (11.8–24.3) 18 (10.0–21.5) 25 (12.5–38.0) 25.5 (21.8–44.5)
Monthly costs in USD, median (IQR) (n = 49) $75.00 ($66.84–$150) $117.33 ($75.00–$150.00) $112.50 ($33.42–$150.00) $75.00 ($27.15–$150.00) $75.00 ($25.00–$91.93)
  1. Demographics, participant reported EB characteristics and CBM-use status of survey respondents (n = 71), grouped by EB types. One participant with unknown EB type was removed from EB type columns
  2. RDEB: recessive dystrophic epidermolysis bullosa, DDEB: dominant dystrophic epidermolysis bullosa, EBS: epidermolysis bullosa simplex, JEB: junctional epidermolysis bullosa, CBM: cannabinoid-based medicine, IQR: inter-quartile range, USD: United States dollar