Prospective, Longitudinal Natural History Study in Dystrophic Epidermolysis Bullosa

Inclusion Criteria

• •Eligibility Criteria
• •Subjects of any age (newborns included) may participate
• •Subjects over 18 years of age and parent(s)/legal guardian(s) of subjects \<18 years of age must provide written informed consent prior to participating in the study and informed assent will be obtained from minors at least 7 years of age
• •Subjects must have a documented diagnosis of DEB based on clinical presentation and either skin biopsy results showing an absence or reduction in C7 or anchoring fibrils or genetic analysis showing a mutation in collagen, type VII, alpha 1 (Col7A1); alternatively, subjects must have a clinical diagnosis of DEB and a documented diagnosis of DEB (as above) in a first degree relative
• •No experimental systemic therapy for DEB including, but not limited to, bone marrow transplantation, systemic immune suppression, or experimental therapies that involve live cells which have the potential for systemic spread such as gene transfer, stem cell infusions or other cell type injections