NCT00004761

Establishment of the National Epidermolysis Bullosa Registry

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: —
• Sponsor: National Center for Research Resources (NCRR) · NIH
• Sex: All
• Age: 0 Years
• Healthy volunteers: Not accepted

Summary

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.

Detailed description

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.

Conditions

• Epidermolysis Bullosa

Timeline

• Start date: 1986-09-01
• First posted: 2000-02-25
• Last updated: 2005-06-24