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Establishment of the National Epidermolysis Bullosa Registry



Establishment of the National Epidermolysis Bullosa Registry

For Condition: Epidermolysis Bullosa
Status: Completed
Sponsor(s): National Center for Research Resources (NCRR) , National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS),Rockefeller University
Synopsis: 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.
Details: 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.
Eligibility:
Study Type:
  Observational, Natural History, Longitudinal
Minimum Age/Maximum Age: /
Genders: Both
Protocol Entry Criteria: - Clinical diagnosis of epidermolysis bullosa
Total Enrollment: 

Location and Contact Information:

Overall Study Official:
JamesKrueger,  Study Chair,  Rockefeller University


Additional Information:
Study ID Numbers:
  199/11706;  RU-0170195
Study Start Date: September 1986
Record last reviewed: March 1998
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00004761

Other Epidermolysis Bullosa Studies:
1. Study of the Nutritional, Metabolic, and Body Composition Profile in Children and Adolescents with Epidermolysis Bullosa

2. Phase I Study of Isotretinoin in Patients With Recessive Dystrophic Epidermolysis Bullosa

3. Establishment of the National Epidermolysis Bullosa Registry

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