GAUCHER REGISTRY

高雪登记处

• 批准号: 7377343
• 负责人: ROBERT A GREENSTEIN
• 金额: $ 0.49万
• 依托单位: UNIVERSITY OF CONNECTICUT SCH OF MED/DNT
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-04-01 至 2007-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7377343
• 关键词: GAUCHER; REGISTRY

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. The Gaucher Registry is an ongoing, post-marketing, observational database that tracks outcomes of routine clinical practice for patients with Gaucher disease. Not all patients in the Registry are on Enzyme Replacement Therapy (ERT). All physicians participating in the Registry are considered members of the International Collaborative Gaucher Group (ICGG). Data collected from ICGG physicians will represent Gaucher disease practice patterns under common clinical conditions. Thus, the data collected by this international, collaborative Registry will provide information to better characterize the natural history and progression of Gaucher disease, as well as the clinical responses of patients whose physicians have prescribed ERT.

该子项目是利用 NIH/NCRR 资助的中心拨款提供的资源的众多研究子项目之一。子项目和研究者 (PI) 可能已从另一个 NIH 来源获得主要资金，因此可以在其他 CRISP 条目中出现。列出的机构是中心的机构，不一定是研究者的机构。戈谢病登记处是一个持续的上市后观察数据库，用于跟踪戈谢病患者常规临床实践的结果。并非登记处的所有患者都接受酶替代疗法 (ERT)。所有参与注册的医生均被视为国际戈谢协作组 (ICGG) 的成员。从 ICGG 医生收集的数据将代表常见临床条件下的戈谢病实践模式。因此，这个国际合作登记处收集的数据将提供信息，以更好地描述戈谢病的自然史和进展，以及医生开出 ERT 处方的患者的临床反应。