ESTABLISH THE NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

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The Contractor shall establish a Clinical Site for the National Epidermolysis Bullosa Registry. The Registry, aimed at searching for the basic defect improving methods of diagnosis, and developing effective methods in treatment and prevention, will be continued to: ii) develop a roster of wellcharacterized patients with the different forms of Epidermolysis Bullosa (EB). Selected patients will be requested to contribute specimens and to be followed as part of diagnostic, research, and in some cases therapeutic, protocols; (2) determine with accuracy and precision the incidence and prevalence of diseases by clinical genetic type in a sufficiently broad geographic region to permit extrapolation of data to the United States as a whole; (3) increase information on genetics, particularly family patterns or sporadic occurrence of disease, including penetrance and severity; (4) assess disease distribution geographically, to search for clusters and patterns and assess the societal and economic impact of the disease; (5) develop a pool of patients of the same genetic type for a wide variety of studies on pathogenesis and genetics of EB, including support for the banking of foster and support well-designed and well-executed clinical trials of new therapeutic interventions in carefully selected groups of patients with one or another form of EB.