Current Studies

Current EB studies

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
• EB 101 for RDEB
• Exon Skipping Therapy for RDEB

Research Studies: (no investigational treatment)

• Characteristics of Patients with RDEB
• RDEB Wound Natural History (Closed)

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.

Other EB Research Areas

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. 

AWS 

We are creating an Amazon Web Services-hosted platform to allow research teams, industry, and patient communities to come together to access, analyze, and accelerate data collection and analysis.

Online, Home-Based Dystrophic Epidermolysis Bullosa Registry 

We have established a novel, home-based EB registry to successfully collect genetic mutation and EB symptom data.

Genotype-Phenotype Associations 

We are conducting research into the relationship between genotype and the clinical symptoms that patients experience, which is essential for better prognostication, genetic counseling, and disease management. 

Qualitative Exploration of Barriers to Genetic Testing and Research Participation

To increase enrollment in clinical trials that utilize CRISPR/Cas9 gene editing of COL7A1, my research plan proposes to qualitatively identify and understand EB patients fears and concerns around genetic testing and participation in clinical trials, with a focus on under-represented minorities.