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Socioeconomic Features of Inherited Epidermolysis Bullosa: The National Epidermolysis Bullosa Registry Experience

Citation

Fine, Jo-David; Johnson, Lorraine B.; Suchindran, Chirayath M.; Bauer, Eugene A.; Carter, D. Martin; McGuire, Joseph; Lin, Andrew; Stern, Robert; Nall, Lexie; & Moshell, Alan (1999). Socioeconomic Features of Inherited Epidermolysis Bullosa: The National Epidermolysis Bullosa Registry Experience. In Fine, Jo-David; Bauer, Eugene A.; McGuire, Joseph; & Moshell, Alan (Eds.), Epidermolysis Bullosa: Clinical, Epidemiologic, and Laboratory Advances and the Findings of the National Epidermolysis Bullosa Registry (pp. 257-79). Baltimore: Johns Hopkins University Press.

Abstract

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. In this book, a distinguished group of medical authorities presents the first comprehensive examination of EB employing a large, well-characterized research study population and using the latest epidemiological and biostatistical research principles. Unique to this work is its assessment of more than two thousand patients with EB, the largest such sample likely ever to be assembled in the world.

Reference Type

Book Chapter

Book Title

Epidermolysis Bullosa: Clinical, Epidemiologic, and Laboratory Advances and the Findings of the National Epidermolysis Bullosa Registry

Author(s)

Fine, Jo-David
Johnson, Lorraine B.
Suchindran, Chirayath M.
Bauer, Eugene A.
Carter, D. Martin
McGuire, Joseph
Lin, Andrew
Stern, Robert
Nall, Lexie
Moshell, Alan

Editor(s)

Fine, Jo-David
Bauer, Eugene A.
McGuire, Joseph
Moshell, Alan

Year Published

1999

Pages

257-79

Publisher

Johns Hopkins University Press

City of Publication

Baltimore

Reference ID

2413