Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa

This study is currently recruiting participants.
Verified March 2014 by Stanford University
Information provided by (Responsible Party):
Alfred Lane, Stanford University Identifier:
First received: May 15, 2009
Last updated: March 27, 2014
Last verified: March 2014

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.

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:

Estimated Enrollment: 12
Study Start Date: April 2009
Estimated Study Completion Date: January 2015
Estimated Primary Completion Date: January 2015 (Final data collection date for primary outcome measure)

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.


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
Please refer to this study by its identifier: NCT00904163

Contact: Emily Gorell, MS (650) 721-7166

United States, California
Stanford University School of Medicine Recruiting
Stanford, California, United States, 94305
Contact: Emily Gorell, MS    650-721-7166   
Principal Investigator: Alfred T Lane         
Sub-Investigator: M. Peter Marinkovich M.D.         
Sub-Investigator: Paul A. Khavari         
Sponsors and Collaborators
Stanford University
Principal Investigator: Alfred T Lane Stanford University
  More Information

No publications provided

Responsible Party: Alfred Lane, Professor of Dermatology and Pediatrics, Stanford University Identifier: NCT00904163     History of Changes
Other Study ID Numbers: SU-04232009-2383
Study First Received: May 15, 2009
Last Updated: March 27, 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 processed this record on April 15, 2014