National Epidermolysis Bullosa Registry: Collection of Clinical, Epidemiological, and Laboratory Data
This study aims to collect clinical, epidemiological, and laboratory data from individuals affected by Epidermolysis Bullosa, a group of rare skin disorders, to better understand the disease and improve its management.
Data Collection
Congenital Abnormalities+10
+ Congenital, Hereditary, and Neonatal Diseases and Abnormalities
+ Pathologic Processes
Natural History
Observing the progression of a disease in untreated individuals in order to understand its typical course and outcomes.Summary
Study start date: September 1, 1986
Actual date on which the first participant was enrolled.PROTOCOL OUTLINE: Patients are enrolled by mail or clinic visit at 1 of 4 clinical centers. Clinical, epidemiological, and laboratory data are collected. Medical and family histories are obtained in a detailed interview in person, by phone, or by mail. Diagnostic studies to confirm the type of epidermolysis bullosa are performed as indicated. A pedigree chart is completed on the first affected family member entered. Selected patients are followed at least biannually. A study duration of approximately 10 years is anticipated.
Protocol
This section provides details of the study plan, including how the study is designed and what the study is measuring.Natural History
Eligibility
Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.Any sex
Biological sex of participants that are eligible to enroll.Healthy volunteers not allowed
If individuals who are healthy and do not have the condition being studied can participate.Conditions
Pathology
Criteria
Clinical diagnosis of epidermolysis bullosa