DATABANK FOR MONITORING PATIENTS WITH CYSTINOSIS

用于监测胱氨酸病患者的数据库

• 批准号: 6118023
• 负责人: JERRY A SCHNEIDER
• 金额: $ 1.46万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-12-01 至 1999-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6118023
• 关键词: clinical research; cystine; cystinosis; dosage; drug adverse effect; drug screening /evaluation; human subject; outcomes research; patient /disease registry

Data collected on cystinosis patients in the U.S. and other countries. Defined outcome measures will be analyzed. Goals of the databank are to monitor the long term effectiveness of Cystagon, track medical and adverse events, monitor cystine levels, drug doses, patient follow-up appointments and supplies of Cystagon. Cystine levels on family members and results from prenatal and placenta testing will be stored for analysis.

在美国和其他国家收集的胱氨酸病患者数据。将分析定义的结局指标。 数据库的目标是监测Cystagon的长期有效性，跟踪医疗和不良事件，监测胱氨酸水平，药物剂量，患者随访预约和Cystagon的供应。 将储存家庭成员的胱氨酸水平以及产前和胎盘检测结果以供分析。