Actively Recruiting
Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
Led by Stanford University · Updated on 2026-04-24
70
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
This research aims to better understand recessive dystrophic epidermolysis bullosa (RDEB), a genetic skin condition causing painful blisters and wounds from minor skin injuries. Researchers are screening patients with RDEB to study their symptoms and cell characteristics to help develop new therapy approaches and identify candidates for future treatment trials. Participants will undergo detailed medical history review, skin and physical examinations, and photographs of wounds. Blood tests will check overall health including Hepatitis B, Hepatitis C, and HIV, with possible genetic testing. Skin biopsies may be taken to assess Collagen 7 and related antibodies. Throughout the study, researchers will collect information to identify suitable patients for ongoing or future clinical trials. The main outcome is identifying RDEB subjects over a period of 10 years. Participant involvement includes medical assessments, laboratory tests, and biopsies as needed, with no treatment provided during this observational study.
CONDITIONS
Brief Title
Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Clinical diagnosis of recessive dystrophic epidermolysis bullosa by a dermatologist
- 7 years of age or older
You will not qualify if you...
- Medical instability that limits the ability to travel to the medical center
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Initial assessment period
Participants provide medical history and undergo skin and physical examinations, with possible photographs and biopsies to assess disease characteristics and collect lab tests.
1 to 2 visits depending on assessments
Duration - Up to 10 years
Participants are observed over time to identify disease characteristics and outcomes.
Visits as scheduled for follow-up assessments
Trial Site Locations
Total: 1 location
1
Stanford University School of Medicine
Stanford, California, United States, 94305
Actively Recruiting
Research Team
I
Irene Bailey-Healy
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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