Current EB Studies

We are investigating the natural history of RDEB wounds to further characterize them to develop meaningful end points for clinical trials. This may include using mobile phone applications so we can examine wounds without having to take a trip to Stanford.

We are exploring the use of a suction device that creates a small blister, in order to objectively measure strength of skin adhesion.

We continue to collect and examine the data from EBCRC and other data base studies to look for clinically useful trends that may help us provide better care to patients with all kinds of EB.

If we start any new clinical trials in these areas, we will list them on this website.

We are currently conducting several clinical trials and research studies for EB. Please click on the links below for details on individual studies. 

As we begin new studies, we will list them here. 

Clinical Trials:

• Genetic Testing for DEB Patients
• Serlopitant for Itch in EB (all types of EB)
• Intravenous Type VII Collagen for RDEB
• EB 101 for RDEB
• Injected Gene Therapy for RDEB
• Exon Skipping Therapy for RDEB

Research Studies: (no investigational treatment)

• Characteristics of Patients with RDEB
• RDEB Wound Natural History
• Drug Repurposing for RDEB and JEB
• Cannabinoid Survey

Active Studies (Not Currently Enrolling New Participants):

• Diacerin for EB Simplex
• Sirolimus for EB Simplex
• Gene Transfer for RDEB (Phase 1/2a)
• Drug Repurposing for EB Simplex

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.