ESTABLISH THE NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY

建立国家大疱性表皮松解症登记处

• 批准号: 2298308
• 负责人: JO-DAVID J FINE
• 金额: $ 24.9万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 1992
• 资助国家: 美国
• 起止时间: 1992-07-01 至 1997-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2298308
• 关键词: ESTABLISH; NATIONAL; EPIDERMOLYSIS; BULLOSA; REGISTRY

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.

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。