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The National Epidermolysis Bullosa Registry


Fine, Jo-David; Johnson, Lorraine B.; & Suchindran, Chirayath M. (1994). The National Epidermolysis Bullosa Registry. Journal of Investigative Dermatology, 102(6), 545-565.


Since its inception in 1986, the NEBR has proved to be an excellent example of how a relatively small allocation of federal research funds for the development of a registry of cases of a single rare disease can have a major impact on the rapid expansion in the depth of knowledge of not only the disease itself but of a number of associated biologic principles, including keratinization and epithelial cell-extracellular matrix interactions. At present, the NEBR is generating extensive clinical, laboratory, and demographic data, both from cross-sectional and longitudinal perspectives, as well as establishing a centralized cell and tissue bank that will serve the scientific community at large as a valuable resource for future basic research on this oftentimes devastating genetic disease.


Reference Type

Journal Article

Year Published


Journal Title

Journal of Investigative Dermatology


Fine, Jo-David
Johnson, Lorraine B.
Suchindran, Chirayath M.