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:


New Study from Shire Pharmaceuticals
debra of America is working with Shire Pharmaceuticals to recruit those with all forms of dystrophic EB to participate in a new study. You will be paid for your time, but the most important aspect is that this study is step one to potentially bringing protein replacement therapy to reality. Shire would like to interview people who either have dystrophic EB, or are their caregivers/parents. We need all ages in this study, from infants to adults.

Click here for a letter that provides information about participating.

PLEASE CONTACT DEBRA'S EB NURSE EDUCATOR, Geri Kelly, if you are interested in joining this very important study:
Geri Kelly
(866) 332-7276
nursegeri [at] debra [dot] org


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


Completed Trials:


IMPORTANT UPDATE ABOUT THE SCIODERM TRIAL (SD-003)
As you all know, Scioderm has been recruiting people with EB to participate in the SD-003 trial. In this trial, some participants will get a placebo which means there should be no treatment effect. Scioderm has reached an agreement with the FDA that will allow everyone completing the current study, SD-003, to participate in what they call an open label study (Study SD-004). This means that everyone who has completed the 3 month study will be eligible to receive the cream with the active ingredient.

This trial is now closed.


Phase IIb Study of SD-101 for Epidermolysis Bullosa (Study SD-003)
Scioderm conducted a 3-month study. SD-101 (or a placebo) will be added to patients’ current standard of care. SD-101 is a topical cream being developed to address the following key issues of patients with EB: wound healing, reducing blisters, decreasing pain, and decreasing itching. Patients must be 6 months or older, and may have the follow types of EB: Simplex, Dystrophic (Recessive), Junctional (non-Herlitz).

This trial is now closed.


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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