EPIDERMOLYSIS-BULLOSA - APPLICATION OF EPIDEMIOLOGIC PRINCIPLES TO THE STUDY OF A GROUP OF RARE DISEASES VIA A DISEASE REGISTRY

The study of rare diseases may provide unique insights into new mechan isms of disease. Such research, however, is difficult to perform, beca use of a variety of problems associated with patient recruitment and c lassification, and the biases that are frequently associated with the study of rare disease. Despite many limitations, establishment of dise ase registries may facilitate this research, as evidenced by the depth and breadth of findings recently obtained via such a mechanism in inh erited epidermolysis bullosa.