Understanding characteristics of patients with recessive dystrophic epidermolysis bullosa
Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
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 |
|---|---|
| Enrollment | 70 (estimated) |
| Sex | All |
| Sponsor | Stanford University Academic / other |
| Locations | 1 site (Stanford, California) |
| Trial ID | NCT01019148 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals aged 7 years and older with a clinical diagnosis of RDEB.
Not a fit: Patients with medical instability that prevents them from traveling to the study location may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved treatment strategies for patients suffering from RDEB.
How similar studies have performed: While this study is observational, similar studies have shown promise in understanding genetic skin disorders and developing targeted therapies.
Eligibility criteria
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 this trial is running
Stanford, California
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.