Multidisciplinary care for patients with epidermolysis bullosa from birth to adolescence: experience of one Italian reference center

Table 1 EB patients followed in Bambino Gesù Children’s Hospital 1990–2020

N		On follow-up	Died/cause	Lost to follow up	Occasionally transited
All patients	215	140 (65%)	27 (13%)	11 (5%)	37 (17%)
DEB^a	138 (64%)	97 (45%)	9 (5%) (RDEB^b/SCC^c)	9 (4%)	23 (11%)
JEB	30 (14%)	9 (4%)	18 (8%) (JEB-sev^e/sepsis)	2 (1%)	1 (0.5%)
EBS^f	45 (21%)	32 (15%)	0	0	13 (6%)
KEB^g	2 (1%)	2 (1%)	0	0	0

^aDEB, Dystrophic epidermolysis bullosa; ^bRDEB, Recessive DEB; ^cSCC, Squamous cell carcinoma, ^dJEB, junctional EB, ^eeJEB-sev, JEB severe, ^fEBS, EB simplex, ^gKEB, Kindler EB

ISSN: 1824-7288