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

History of Changes

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:

Genetics Home Reference related topics: dystrophic epidermolysis bullosa epidermolysis bullosa simplex epidermolysis bullosa with pyloric atresia junctional epidermolysis bullosa

Genetic and Rare Diseases Information Center resources: Epidermolysis Bullosa Dystrophic Epidermolysis Bullosa

U.S. FDA Resources

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 (Adult, Senior)
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

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

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


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 September 23, 2016

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