Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa
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The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT01019148 |
Recruitment Status :
Recruiting
First Posted : November 25, 2009
Last Update Posted : October 25, 2022
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Condition or disease |
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Epidermolysis Bullosa Dystrophica |
We will obtain a detailed medical history and will perform a skin examination and brief physical exam. Photographs may be taken. We will ask questions about the size and duration wounds.
LAB TESTS We will draw blood to determine overall health status to include Hepatitis B, Hepatitis C, and Human Immunodeficiency Virus (HIV) testing. Genetic testing may also be performed.
BIOPSIES Biopsies may be collected to check for Collagen 7 and for antibodies to Collagen 7.
Based on the results obtained, it may be possible to identify patients who would qualify to participate in current or future clinical trials.
Study Type : | Observational |
Estimated Enrollment : | 70 participants |
Observational Model: | Case-Only |
Time Perspective: | Prospective |
Official Title: | Characteristics of Patients With Recessive Dystrophic Epidermolysis Bullosa |
Actual Study Start Date : | November 10, 2009 |
Estimated Primary Completion Date : | December 31, 2025 |
Estimated Study Completion Date : | December 31, 2025 |

- Identification of subjects with Recessive Dystrophic Epidermolysis Bullosa [ Time Frame: 4 years ]Identification of subjects with Recessive Dystrophic Epidermolysis Bullosa for future studies
Biospecimen Retention: Samples With DNA

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Ages Eligible for Study: | Child, Adult, Older Adult |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
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

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01019148
Contact: Irene Bailey-Healy | (650) 721-7149 | baileyhi@stanford.edu | |
Contact: Nicki Harris | nharris6@stanford.edu |
United States, California | |
Stanford University School of Medicine | Recruiting |
Stanford, California, United States, 94305 | |
Contact: Irene Bailey-Healy 650-721-7149 baileyhi@stanford.edu | |
Principal Investigator: Jean Tang, MD, PhD | |
Sub-Investigator: M. Peter Marinkovich, MD | |
Sub-Investigator: Anthony Oro, MD |
Principal Investigator: | Jean Tang, MD, PhD | Stanford University |
Responsible Party: | Jean Yuh Tang, Professor, Stanford University |
ClinicalTrials.gov Identifier: | NCT01019148 |
Other Study ID Numbers: |
SU-11182009-4402 |
First Posted: | November 25, 2009 Key Record Dates |
Last Update Posted: | October 25, 2022 |
Last Verified: | October 2022 |
Epidermolysis Bullosa Epidermolysis Bullosa Dystrophica Skin Abnormalities Congenital Abnormalities Skin Diseases, Genetic |
Genetic Diseases, Inborn Skin Diseases Skin Diseases, Vesiculobullous Collagen Diseases Connective Tissue Diseases |