NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

该方案的总体目标是确定大疱性表皮炎的治疗方式，这些方式既合理又有经验。在本研究的历史过程中，对大疱性表皮病患者进行了严格的临床、显微镜和生化分析，以确定这组复杂的水疱性疾病。该建议直接关注的疾病是所有形式的大疱性表皮病，但特别是隐性营养不良性大疱性表皮病和显性单纯性大疱性表皮病。GCRC的计算机资源将继续用于数据管理和向北卡罗来纳州的国家总部传输电子数据。

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 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 dystriphic 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.