The National Epidermolysis Bullosa Registry

J Invest Dermatol. 1994 Jun;102(6):54S-56S. doi: 10.1111/1523-1747.ep12388622.


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.

Publication types

  • Research Support, U.S. Gov't, P.H.S.
  • Review

MeSH terms

  • Data Collection
  • Epidermolysis Bullosa / epidemiology*
  • Humans
  • Incidence
  • National Institutes of Health (U.S.)
  • Registries*
  • United States / epidemiology