Clinical trial Recruiting at 1 site Observational

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.

More Epidermolysis Bullosa Dystrophica trials

Quick facts

Study typeObservational
SexAll
Enrollment70 (estimated)
SponsorStanford University
Academic / other
Locations1 site (Stanford, California)
StatusRecruiting
StartedNovember 10, 2009
Main results expectedDecember 31, 2029
Study endsDecember 31, 2029
Registry record updatedApril 24, 2026
Trial IDNCT01019148 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.