ESTABLISH THE NATIONAL EPIDEMIOLYSIS BULLOSA REGISTRY

本合同的目的是继续运营一个临床站点 在全国大疱性表皮松解症登记处，旨在 寻找根本缺陷，改进诊断方法， 开发治疗和预防该病的有效方法。 临床现场-将负责与E.B.患者的直接接触 以及他们在注册处的登记。这将包括标准化 病史、体格检查、一般实验室检查，以及 E.B.诊断所需的专门研究。确定了 诊断E.B.及其亚群所需的研究是 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.