The National Epidermolysis Bullosa Registry.
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.
Fine
J D
JD
Department of Dermatology, School of Medicine, University of North Carolina at Chapel Hill 27514.
Johnson
L B
LB
Suchindran
C M
CM
D003625:Data Collection; D004820:Epidermolysis Bullosa / Q000453:epidemiology*; D006801:Humans; D015994:Incidence; D009316:National Institutes of Health (U.S.); D012042:Registries; D014481:United States / Q000453:epidemiology