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 email@example.com. 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).