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Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa

This study has been completed.
Sponsor:
ClinicalTrials.gov Identifier:
NCT00904163
First Posted: May 19, 2009
Last Update Posted: May 16, 2014
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.
Information provided by (Responsible Party):
Alfred Lane, Stanford University
  Purpose
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
Epidermolysis Bullosa Dystrophica

Study Type: Observational
Study Design: Observational Model: Case-Only
Time Perspective: Prospective
Official Title: Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa

Resource links provided by NLM:


Further study details as provided by Alfred Lane, Stanford University:

Biospecimen Retention:   Samples With DNA
Skin biopsies, serum

Enrollment: 13
Study Start Date: April 2009
Study Completion Date: May 2014
Primary Completion Date: May 2014 (Final data collection date for primary outcome measure)
  Eligibility

Information from the National Library of Medicine

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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
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

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 Submitted: May 15, 2009
First Posted: May 19, 2009
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