Table 1.

Demographic and Clinical Characteristics

	N (%)
Age – yr (range)	19.5±13.4 (1.8–45.2)
Children (< 18 years old)	16 (51.6)
Male sex	17 (54.8)
Race /ethnicity
White / Non-Hispanic	19 (61.3)
White / Hispanic	8 (25.8)
Black	1 (3.2)
Asian	3 (9.7)
EB Type, Subtype
Simplex, Generalized	2 (6.5)
Simplex, Localized	8 (25.8)
Dominant Dystrophic	5 (16.1)
Recessive Dystrophic, generalized	7 (22.6)
intermediate	9 (29.0)
Recessive Dystrophic,generalized severe
Disease severity, based on screening
Mild	11 (35.5)
Moderate	10 (32.3)
Severe	10 (32.3)
Physician Global Assessment
Mild	13 (41.9)
Moderate	9 (29.0)
Severe	9 (29.0)