Characteristics of Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB)

Status: Open / Recruiting


  • -       Clinical diagnosis of RDEB
  • -       Age 3 or older
  • -       Able to travel to Stanford University Medical Center


About the study:

This study screens participants with RDEB using blood and skin biopsies to evaluate the characteristics of their RDEB and their skin cells in order to develop new treatment strategies.  

The results of this study will also determine whether subjects are eligible for other treatment studies at Stanford or other hospitals conducting clinical trials.

This study requires travel to Stanford for one study visit. We will pay the travel and laboratory expenses related to this trial.

This study is the first step to enroll in most of our other studies. If interested in any studies, participants must first enroll in this study, as it determines which other studies they may qualify for.


Study Coordinator: Nicki Harris 

Link in

This study is funded by the National Institute of Health, Krystal, Abeona Therapeutics, Phoenix Tissue Repair, and Fibrocell.

Previously published data from the Characteristics study:

Gorell ES, Nguyen N, Siprashvili Z, Marinkovich MP, Lane AT. Characterization of dystrophic epidermolysis bullosa patients for collagen VII therapy. British Journal of Dermatology.  Sept. 2015. 173(3): 821-823.