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J Invest Dermatol. 1994 Jun;102(6):54S-56S.

The National Epidermolysis Bullosa Registry.

Author information

1
Department of Dermatology, School of Medicine, University of North Carolina at Chapel Hill 27514.

Abstract

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.

PMID:
8006439
DOI:
10.1111/1523-1747.ep12388622
[Indexed for MEDLINE]

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