Establishment of the National Epidermolysis Bullosa Registry
OBJECTIVES: I. Develop a large roster of well-characterized patients with various forms of inherited and acquired epidermolysis bullosa (EB).
II. Generate a large data bank of clinical, historical, and genetic information concerning these patients.
III. Accumulate donated tissue specimens, including selected cells and DNA, from selected patient subsets for the establishment of permanent tissue cell banks.
IV. Promote and facilitate research in EB.
|Study Design:||Observational Model: Natural History
Time Perspective: Longitudinal
|Study Start Date:||September 1986|
PROTOCOL OUTLINE: Patients are enrolled by mail or clinic visit at 1 of 4 clinical centers. Clinical, epidemiological, and laboratory data are collected.
Medical and family histories are obtained in a detailed interview in person, by phone, or by mail. Diagnostic studies to confirm the type of epidermolysis bullosa are performed as indicated. A pedigree chart is completed on the first affected family member entered.
Selected patients are followed at least biannually. A study duration of approximately 10 years is anticipated.
|Study Chair:||James G. Krueger||Rockefeller University|