Establishment of the National Epidermolysis Bullosa Registry
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
研究概览
简要总结
OBJECTIVES: I. Develop a large roster of well-characterized patients with various forms of inherited and acquired epidermolysis bullosa (EB).
II. Generate a large data bank of clinical, historical, and genetic information concerning these patients.
III. Accumulate donated tissue specimens, including selected cells and DNA, from selected patient subsets for the establishment of permanent tissue cell banks.
IV. Promote and facilitate research in EB.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Natural History
- 时间视角
- Other
入排标准
- 年龄范围
- 0 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- 未提供