NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

该方案的总体目标是定义治疗 大疱性表皮炎的治疗方式既合理， 经验有用。 在这12年的历史中， 在一项研究中，对大疱性表皮松解症患者进行了批判性分析， 临床上，显微镜下和生化上， 一组复杂的起泡性疾病。当前关注的疾病 所有形式的大疱性表皮病， 隐性营养不良性大疱性表皮松解症和显性表皮松解症 单纯性大疱 将继续利用全球区域中心的计算机资源收集数据 管理和电子数据传输到国家总部， 北卡罗来纳州。

The overall goal of this protocol has been to define treatment modalities for epidermolysis bullosa which are both rational and empirically useful. In the course of the twelve year history of this study, patients with epidermolysis bullosa have been critically analyzed clinically, microscopically and biochemically in order to define this complex group of blistering disorders. The disease of immediate interest to the proposal are all forms of epidermolysis bullosa but especially recessive dystrophic epidermolysis bullosa and dominant epidermolysis bullosa simplex. Computer resource in the GCRC will continue to be utilized for data management and electronic data transfer to the National Headquarters in North Carolina.