Frontlight ResearchEarly access
Taking people in United StatesNo phase
Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
Key facts
- Who runs it
- Stanford University
- Where
- Stanford, United StatesSee the site
- Trial code
- Status
- Recruiting
- People taking part
- 70 people, planned
- Started
- 10 Nov 2009
- Expected to end
- 31 Dec 2029
- Type of study
- Observational
- Record updated
- 24 April 2026
Who can take part
- Sex
- Women and men
- Healthy volunteers
- Cannot take part
The registry criteria, word for word
Show all 3 criteriaShow less
Who can take part
- Clinical diagnosis of RDEB by local dermatologist
- 7 years of age or older
Who cannot take part
- -Medical instability limiting ability to travel to Stanford University Medical Center
Where in United States
- Stanford University School of MedicineStanford, United StatesContact: Irene Bailey-HealyTaking people
About the trial
What the trial wants to find out
Recessive dystrophic epidermolysis bullosa (RDEB) is a disease caused by genetic mutations in the gene for type VII collagen. Patients with RDEB develop large, severely painful blisters and open wounds from minor trauma to their skin. We are screening subjects with RDEB to evaluate characteristics of the subjects and their cells in order to develop new strategies of therapy and determine whether subjects could be candidates for treatment studies.
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Record updated
- 24 April 2026