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Establishment of the National Epidermolysis Bullosa Registry

This study has been completed.
Sponsor:
ClinicalTrials.gov Identifier:
NCT00004761
First Posted: February 25, 2000
Last Update Posted: December 9, 2005
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
Collaborators:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Rockefeller University
Information provided by:
Office of Rare Diseases (ORD)
February 24, 2000
February 25, 2000
December 9, 2005
September 1986
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No Changes Posted
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Establishment of the National Epidermolysis Bullosa Registry
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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.

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.

Observational
Observational Model: Natural History
Time Perspective: Longitudinal
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Epidermolysis Bullosa
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Lin AN, Carter DM: Epidermolysis Bullosa: Basic and Clinical Aspects. New York: Springer Verlag, 1992.

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Completed
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  • Clinical diagnosis of epidermolysis bullosa
Sexes Eligible for Study: All
Child, Adult, Senior
No
Contact information is only displayed when the study is recruiting subjects
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NCT00004761
199/11706
RU-0170195
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National Center for Research Resources (NCRR)
  • National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
  • Rockefeller University
Study Chair: James G. Krueger Rockefeller University
Office of Rare Diseases (ORD)
July 2004