Epidermolysis Bullosa Research Consortium (EBCRC) Study

We are currently looking for subjects to participate in a study of the characteristics of individuals with Epidermolysis Bullosa (EB). This is an observational study in which we will be conducting a chart review of subjects with EB. This is NOTa treatment study.  A national Epidermolysis Bullosa Clinical Research Consortium (EBCRC) has been created, consisting of a group of physicians dedicated towards treating patients with EB. The main focus of this group is to create a national database for the clinical characterization of Epidermolysis Bullosa. There are currently ten centers participating in this study:

  • Stanford University (Palo Alto, California)
  • Cincinnati's Children's Hospital (Cincinnati, Ohio)
  • Columbia University  (New York, NY)
  • Dell Children's Medical Center, Austin  (Austin, TX)
  • Henry Ford Hospital, Detroit   (Detroit, Michigan)
  • Hospital for Sick Children, Toronto (SickKids)  (Toronto, Canada)
  • Northwestern University (Evanston, IL)
  • University of Colorado  (Denver, CO)
  • University of Miami  (Miami, FL)
  • University of Massachusetts  (Worcester, MA)

We are currently looking for subjects who meet the following criteria:

  • Have a clinical diagnosis of Epidermolysis Bullosa by a local dermatologist
  • Are of any age and willing to give consent, or if a minor, their parents or guardians are willing to give consent.
  • Medically stable to travel to one of the participating centers

If they would like more information, or have any questions regarding our study and/or our eligibility criteria for any of these centers, please have them contact the Clinical Trial Coordinator for this study, Rasidat Adeduntan, at (650) 721-7163 or at radeduntan@stanford.edu. For information about your rights as a research participant, please contact the Stanford Institutional Review Board (IRB) at (650) 723-5244, or toll-free at 1 (866) 680-2906.

The Epidermolysis Bullosa Clinical Research Consortium (EBCRC) is funded by the Epidermolysis Bullosa Medical Research Foundation (EBMRF   http://www.ebkids.org ) and the Jackson Gabriel Silver Foundation (JGSF) (http://www.jgsf.org).