Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa

This study has been completed.
Sponsor:
Information provided by (Responsible Party):
Alfred Lane, Stanford University
ClinicalTrials.gov Identifier:
NCT00904163
First received: May 15, 2009
Last updated: May 15, 2014
Last verified: May 2014
  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 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

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
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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Please refer to this study by its ClinicalTrials.gov identifier: 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

No publications provided

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
Study First Received: May 15, 2009
Last Updated: May 15, 2014
Health Authority: United States:National Institute of Health

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

ClinicalTrials.gov processed this record on August 21, 2014