FABRY REGISTRY

法布里注册表

• 批准号: 7607611
• 负责人: ROBERT A GREENSTEIN
• 金额: $ 0.53万
• 依托单位: UNIVERSITY OF CONNECTICUT SCH OF MED/DNT
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-04-01 至 2008-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7607611
• 关键词: Clinical Data; Collection; Computer Retrieval of Information on Scientific Projects Database; Databases; Evaluation; Fabry Disease; Funding; Future; Grant; Institution; Natural History; Outcome; Patients; Physicians; Registries; Research; Research Personnel; Resources; Source; Therapeutic Intervention; United States National Institutes of Health

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 Fabry Registry is an ongoing, observational database that tracks the natural history and outcomes of patients with Fabry disease. Participation is open to all physicians managing patients with Fabry disease. Physicians are encouraged to collaborate, share observations, and generate hypotheses for evaluation, as well as assist in the collection of clinical data in an effort to guide and assess future therapeutic interventions.

这个子项目是许多研究子项目中的一个 由NIH/NCRR资助的中心赠款提供的资源。子项目和 研究者（PI）可能从另一个NIH来源获得了主要资金， 因此可以在其他CRISP条目中表示。所列机构为 研究中心，而研究中心不一定是研究者所在的机构。 Fabry登记是一个持续的观察性数据库，跟踪Fabry病患者的自然病史和结局。参与开放给所有管理法布里病患者的医生。鼓励医生合作，分享观察结果，并产生评估假设，以及协助收集临床数据，以指导和评估未来的治疗干预措施。