NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

该方案的总体目标是定义治疗方法 治疗大疱性表皮松解症的方法是合理的和 在经验上是有用的。在这十二年的历史进程中 研究人员对大疱性表皮松解症患者进行了批判性分析 临床、显微镜和生化来定义这一点 一组复杂的水泡性疾病。关乎切身利益的疾病 各种形式的大疱性表皮松解症，尤其是 隐性营养不良性大疱性表皮松解症和显性大疱性表皮松解症 单纯性大疱病 GCRC的计算机资源将继续用于数据处理 管理和电子数据传输至#年国家总部 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.