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DonateWith help from supporters like you, Debra of America continues to provide programs and services to people with Epidermolysis Bullosa and their families, and to support EB research.Thank You. |
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The mounting cost of bandages is most often not covered by an EB family's health insurance. | ![]() |
89.4¢ of every dollar donated goes directly to EB patients, families, and research. |
Current Research Trials
EB researchers from countries around the globe are investigating new therapies. Stem cell transplantation, protein replacement, 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. If you are interested in participating in a study, please explore the list below or visit www.clinicaltrials.gov.
Current U.S. studies that are recruiting include:
A Study of the Efficacy and Safety of ABH001 in the Treatment of Patients With Epidermolysis Bullosa Who Have Wounds That Are Not Healing
The study, sponsored by Shire Regenerative Medicine, is evaluating a dermal substitute therapy for the treatment of non-healing wounds in those with generalized EB. The study is currently recruiting participants and is being conducted in the United States and in sites around the world, including Austria, Canada (Quebec), France, Germany, Poland, Portugal and Spain.
Click here for details and study locations.
For further information on this study, please visit clinicaltrials.gov.
To discuss possible participation in this study, please contact the study coordinator, Kate Barcomb at 858-754-3728 or kbarcomb [at] shire [dot] com.
Stem Cell Transplant for Epidermolysis Bullosa
Condition: Epidermolysis Bullosa
Interventions:
Drug: Cyclophosphamide; Drug: Fludarabine;
Drug: Anti-thymocyte globulin; Drug: Cyclosporine A;
Drug: Mycophenolate mofetil;
Procedure: Hematopoietic stem cell transplant;
Procedure: Mesenchymal stem cell transplant;
Radiation: Total body irradiation
Characteristics of Patients With Dystrophic Epidermolysis Bullosa
Conditon: Epidermolysis Bullosa Dystrophica
Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa
Conditons: Epidermolysis Bullosa Dystrophica; Epidermolysis Bullosa
Intervention: Genetic: LZRSE-Col7A1 Engineered Autologous Epidermal Sheets (LEAES)
Study of Inflammatory Mechanisms in Epidermolysis Bullosa Simplex- Dowling Meara
Conditon: Epidermolysis Bullosa Simplex Dowling Meara
Intervention: Procedure: Taking of liquid and top of blisters
Treatment of Chronic and Non-Chronic Wounds in Patients With Recessive Dystrophic Epidermolysis Bullosa Using Helicoll Collagen Dressings Versus Standard of Care
Conditons: Epidermolysis Bullosa Dystrophica; Epidermolysis Bullosa
Interventions: Device: Helicoll; Device: Standard of Care Dressings
A Prospective Single Center Within Subject Controlled Observational Study to Evaluate Apligraf(R) in Nonhealing Wounds of Subjects With Epidermolysis Bullosa
Conditons: Epidermolysis Bullosa; Skin Equivalent
Intervention: Device: Apligraf application
Characteristics of Adult Patients With Recessive Dystrophic Epidermolysis Bullosa
Conditon: Epidermolysis Bullosa Dystrophica
Efficacy of Granulocyte Colony Stimulating Factor (GCSF) In Patients With Dystrophic Epidermolysis Bullosa
Conditon: Dystrophic Epidermolysis Bullosa
Intervention: Drug: Granulocyte Colony Stimulating Factor (GCSF)
Treatment of Dowling Maera Type of Epidermolysis Bullosa Simplex by Oral Erythromycin
Conditon: Epidermolysis Bullosa
Intervention: Drug: Oral erythromycin
Grafting of Epidermolysis Bullosa Wounds Using Cultured Revertant Autologous Keratinocytes
Conditon: Epidermolysis Bullosa
Intervention: Procedure: Grafting of Autologous Cultured Revertant Keratinocytes
Treatment of Epidermolysis Bullosa Dystrophica by Polyphenon E (Epigallocatechin 3 Gallate)
Conditon: Epidermolysis Bullosa Dystrophica
Intervention: Drug: Polyphenon E before Placebo; Drug: placebo before treatment
Current U.S. studies that are not yet recruiting INCLUDE:
Prospective, Longitudinal Natural History Study in Dystrophic Epidermolysis Bullosa
Condition: Dystrophic Epidermolysis Bullosa
Completed Trials:
Allogeneic Hematopoietic Stem Cell Transplant for Epidermolysis Bullosa (BMT for EB)
John E. Wagner, MD
Masonic Cancer Center, University of Minnesota
Contact: Timothy Krepski 612-273-2800 tkrepsk1 [at] fairview [dot] org
Click here for Results
Study of Alwextin® Cream in Treating Epidermolysis Bullosa
Dr. Amy S. Paller and Dr. Anne Mahoney: Northwestern University
Contact: Marcy Urbanich 312-695-6829 m-urbanich [at] northwestern [dot] edu
Click here for Results
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