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Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa

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ClinicalTrials.gov Identifier: NCT00904163
Recruitment Status : Completed
First Posted : May 19, 2009
Last Update Posted : May 16, 2014
Sponsor:
Information provided by (Responsible Party):
Alfred Lane, Stanford University

Study Description
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Brief Summary:
Recessive dystrophic epidermolysis bullosa (RDEB) is a severe inherited blistering disease caused by the absence of type VII collagen. Patients with RDEB develop large, severely painful blisters and open wounds from minor trauma to their skin. We are screening RDEB subjects to determine additional characteristics of patients who survive to adulthood.

Condition or disease
Epidermolysis Bullosa Dystrophica

Study Design
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Study Type : Observational
Actual Enrollment : 13 participants
Observational Model: Case-Only
Time Perspective: Prospective
Official Title: Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa
Study Start Date : April 2009
Actual Primary Completion Date : May 2014
Actual Study Completion Date : May 2014

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Groups and Cohorts
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Outcome Measures
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Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

Biospecimen Retention:   Samples With DNA
Skin biopsies, serum

Eligibility Criteria
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Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

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Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Adults (18 years of age or older) with RDEB diagnosis by a local dermatologist, who can travel to Stanford University Medical Center.
Criteria

Inclusion Criteria:1. Clinical diagnosis of RDEB by local dermatologist. 2. 18 years of age or more and willing to give consent.

Exclusion Criteria:1. Medical instability limiting ability to travel to Stanford University Medical Center.

Contacts and Locations
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Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00904163


Locations
United States, California
Stanford University School of Medicine
Stanford, California, United States, 94305
Sponsors and Collaborators
Stanford University
Investigators
Principal Investigator: Alfred T Lane Stanford University
More Information
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Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

Responsible Party: Alfred Lane, Professor of Dermatology and Pediatrics, Stanford University
ClinicalTrials.gov Identifier: NCT00904163     History of Changes
Other Study ID Numbers: SU-04232009-2383
First Posted: May 19, 2009    Key Record Dates
Last Update Posted: May 16, 2014
Last Verified: May 2014

Additional relevant MeSH terms:
Epidermolysis Bullosa
Epidermolysis Bullosa Dystrophica
Skin Abnormalities
Congenital Abnormalities
Skin Diseases, Genetic
 Genetic Diseases, Inborn
Skin Diseases
Skin Diseases, Vesiculobullous
Collagen Diseases
Connective Tissue Diseases