Inherited epidermolysis bullosa (EB) is a group of rare genetic diseases in which the skin is mechanically very fragile, resulting in chronic blister formation. In the most severe cases, affected persons may also experience disease involvement of other organs, cancer, and even premature death. This examination of EB employs a large research study population and uses epidemiological and biostatistical research principles. It also assesses more than 2000 patients with EB. In addition to reviews on basic science aspects of the disease, the book contains significant data generated on behalf of the National EB Registry Project during its first ten years of existence (1986-1995). Also included are tables that should prove useful to clinicians and scientists alike as they diagnose, study or treat individuals or groups with inherited EB. Among the topics discussed are molecular and cell biology, epidemiology, diagnosis, classification, medical and surgical treatments, and clinical outcomes.
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A 2000 study studied this question.