ESTABLISH THE NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

本合同的目的是建立一个国家环境保护局， Bullosa登记旨在寻找基本缺陷，改进方法 诊断，并制定有效的治疗和预防方法。 承包商将建立并运营临床协调中心 在书记官处。 书记官处将（1）编制油井名册， 不同形式的大疱性表皮病患者的特征;（2） 准确和精确地确定 （3）评估疾病的地理分布， 的社会和经济影响， （4）建立一个广泛的相同遗传类型的患者库， 对E.B.的发病机制和遗传学的各种研究;（5）培养 精心设计和良好执行的临床试验， 在精心挑选的患者群体中进行干预， 疾病的形式。

The purpose of this contract is to establish a National Epidermolysis Bullosa Registry aimed at searching for the basic defect, improving methods of diagnosis, and developing effective methods in treatment and prevention. The Contractor will establish and operate a Clinical Coordinating Center under the Registry. The Registry will (1) develop a roster of well characterized patients with different forms of epidermolysis bullosa; (2) determine with accuracy and precision the incidence and prevalence of disease; (3) assess disease distribution geographically to search for clusters and patterns, and assess the societal and economic impact of the disease; (4) develop a pool of patients of the same genetic type for a wide variety of studies on pathogenesis and genetics of E.B.; and (5) foster well designed and well executed clinical trials of new therapeutic interventions in carefully selected groups of patients with one or another form of the disease.