ESTABLISH THE NATIONAL EPIDEMIOLYSIS BULLOSA REGISTRY

本合同的目的是继续经营一个临床研究中心 根据国家大疱性表皮病登记处， 寻找根本缺陷，改进诊断方法， 发展有效的治疗和预防方法。 临床研究中心将负责直接联系E.B.患者 并在登记处登记。 这将包括标准化 病史、体格检查、一般实验室检查以及 E.B.所需的专业研究诊断. 测定 E.B.诊断所需的研究它的子群是 承包商的责任。

The purpose of this contract is to continue a clinical site to be operated under the National Epidermolysis Bullosa Registry which is aimed at searching for the basic defect, improving methods of diagnosis, and developing effective methods in treatment and prevention of the disease. The clinical site-will be responsible for direct contact with E.B. patients and for their enrollment in the Registry. This will include standardized history, physical examination, general laboratory examination, and those specialized studies required for E.B. diagnosis. Determination of the studies required for the diagnosis of E.B. and its subgroups is the responsibility of the Contractor.