Precise estimates of the incidence and prevalence of each major subtype of inherited epidermolysis bullosa (EB) in the US are now available, according to a recent study, and that should assist investigators in choosing which subtypes are amenable to properly designed, large-scale, clinical trials. In order to determine the incidence and prevalence of inherited EB stratified by subtype in the US during a 16-year period, researchers obtained data from 3,271 patients enrolled in the National Epidermolysis Bullosa Registry from January 1, 1986, through December 31, 2001. They found:

• During the first 5 years of funding of the registry, the overall incidence and prevalence of inherited EB were 19.60 and 8.22 per 1 million live births, respectively.

• When reassessed over the entire 16 years of the study, the prevalence rose to 11.07, whereas the overall incidence remained unchanged at 19.57 cases.

• Changes were also observed within some disease subsets as increased numbers of patients were identified, recruited, followed up longitudinally, and resubclassified as needed.