It is an exciting time in the history of EB research. Researchers from countries around the globe are investigating new therapies. Stem cell transplantation, protein and gene therapies are moving forward and various wound care therapies are being tested. All of these efforts are aimed at improving the lives of those with EB.

While it has yet to be determined which of these varied modalities will ultimately be the most successful, all are contributing to what is known about EB. This assists not only today’s researchers, but provides a knowledge base for future efforts.

Current U.S. studies that are recruiting include:

Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa
Contact: Emily S. Gorell, MS Phone: 650-721-7166 Email: egorell [at] stanford [dot] edu
Principal Investigators:
Dr. Anna L. Bruckner, M. Peter Marinkovich, M.D., Dr. Paul A. Khavari, Dr. Alfred T. Lane
Sponsors and Collaborators:
Stanford University and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

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Dr. David T. Woodley and Dr. Mei Chen
Department of Dermatology at University of Southern California at Los Angeles
Characterization of Dystrophic Epidermolysis Bullosa Patients and Their Mutations for Protein Therapy
Contact: Dr. Mei Chen: 323-865-0621; chenm [at] usc [dot] edu
Dr. David Woodley: 323-865-0983; dwoodley [at] usc [dot] edu
Ms. Gail Kudo (Study Coordinator): 323-865-3564; gkudo [at] usc [dot] edu

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The Dermatology Department at Stanford School of Medicine
Recessive Dystrophic Epidermolysis Bullosa (RDEB) – Gene Transfer Study
Contact: Emily Gorell at 650-721-7166 or at egorell [at] stanford [dot] edu
For more information visit http://clinicaltrials.gov/ct2/show/NCT01263379 or http://med.stanford.edu/clinicaltrials/detail.do?studyId=7130
Download PDF with more information.

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John E. Wagner, MD
Masonic Cancer Center, University of Minnesota
Allogeneic Hematopoietic Stem Cell Transplant for Epidermolysis Bullosa (BMT for EB)
Contact: Timothy Krepski 612-273-2800 tkrepsk1 [at] fairview [dot] org

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Dr. Amy S. Paller and Dr. Anne Mahoney: Northwestern University:
Study of Alwextin® Cream in Treating Epidermolysis Bullosa
Contact: Marcy Urbanich 312-695-6829 m-urbanich [at] northwestern [dot] edu

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Dr. Alred T. Lane: Stanford University:
Characteristics of Patients with Dystrophic Epidermolysis Bullosa
Contact: Andrea Tichy, PhD 650-721-7166 atichy [at] stanford [dot] edu

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Dr. Alfred T. Lane: Stanford University:
Characteristics of Adult Patients with Recessive Dystrophic Epidermolysis Bullosa
Contact: Andrea Tichy, PhD 650-721-7166 atichy [at] stanford [dot] edu

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For more information, please visit www.clinicaltrials.gov