Understanding characteristics of patients with recessive dystrophic epidermolysis bullosa
Official title: Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
Run by Stanford University · NCT01019148 · Data updated 2026-11-12
This study looks at people with recessive dystrophic epidermolysis bullosa to gather information that could help find new treatments for their skin condition.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 70 (estimated) |
| Sponsor | Stanford University Academic / other |
| Locations | 1 site (Stanford, California) |
| Status | Recruiting |
| Started | November 10, 2009 |
| Main results expected | December 31, 2029 |
| Study ends | December 31, 2029 |
| Registry record updated | April 24, 2026 |
| Trial ID | NCT01019148 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals aged 7 years and older with a clinical diagnosis of RDEB.
✕Probably not a fit
Patients with medical instability that prevents them from traveling to the study location may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study focuses on patients with recessive dystrophic epidermolysis bullosa (RDEB), a genetic skin disorder characterized by painful blisters and wounds. Participants will undergo a thorough medical history review, skin examinations, and may have photographs taken of their condition. Blood tests will be conducted to assess overall health, including screenings for Hepatitis B, Hepatitis C, and HIV, along with potential genetic testing. The study aims to gather data that could help identify candidates for future treatment studies.
Why it matters
Potential benefit: If successful, this study could lead to improved treatment strategies for patients suffering from RDEB.
How similar studies have gone: While this study is observational, similar studies have shown promise in understanding genetic skin disorders and developing targeted therapies.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis of RDEB by local dermatologist * 7 years of age or older Exclusion Criteria: -Medical instability limiting ability to travel to Stanford University Medical Center
Where it's running
-
Stanford University School of Medicine
Stanford, California, United States Recruiting
Study contacts
- Principal investigator: Jean Tang, MD, PhD — Stanford University
- Study coordinator: Irene Bailey-Healy
- Email: baileyhi@stanford.edu
- Phone: (650) 721-7149
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Observing corneal abrasions in patients with Dystrophic Epidermolysis Bullosa
This study looks at how corneal abrasions develop over time in people with Dystrophic Epidermolysis Bullosa by tracking their symptoms through weekly diaries and monthly questionnaires.
-
Gene-modified autologous skin graft (GMEB-SASS) for RDEB
This trial will try a gene-modified skin graft grown from a patient's own cells to help wounds heal in people with recessive dystrophic epidermolysis bullosa (RDEB).
-
Energy-F703EB Cream for Epidermolysis Bullosa: a skin cream test in adults
This phase 2 study tests ENERGI-F703EB Cream versus a matching vehicle to see if it is safe and helps small EB skin lesions in adults.
-
Ev.FV to heal wounds in dystrophic epidermolysis bullosa
This trial will test whether Ev.FV, a mesenchymal stem cell-derived extracellular vesicle therapy, helps heal wounds in people with dystrophic epidermolysis bullosa.
-
KB803 eye drops versus placebo for people with dystrophic epidermolysis bullosa
This trial tests whether KB803 eye drops, given three times a week, can reduce recurrent corneal abrasions in children and adults with dystrophic epidermolysis bullosa.
-
Using IV immunoglobulin to lower collagen VII antibodies in dystrophic epidermolysis bullosa
This trial tests whether IV immunoglobulin given to people with recessive dystrophic epidermolysis bullosa who are on VYJUVEK helps wounds heal faster and lowers collagen VII and HSV‑1 antibody levels.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.