ESTABLISH THE NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

本合同的目的是建立全国表皮松解术 大疱病登记处旨在寻找基本缺陷，改进方法 诊断，并开发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 在登记处之下。书记官处将(1)编制一份油井名册 描述不同类型大疱性表皮松解症患者的特征；(2) 准确和精准地确定发病率和流行率 疾病；(3)评估疾病地理分布以搜索 集群和模式，并评估 疾病；(4)发展一批具有相同基因类型的患者 关于E.B.发病机制和遗传学的各种研究；以及(5)Foster 设计良好、执行良好的新疗法临床试验 在精心挑选的患者群体中进行干预 这种疾病的形式。

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.