BILIARY ATRESIA RESEARCH CONSORTIUM DATABASE

这个子项目是利用由NIH/NCRR资助的中心拨款提供的资源的许多研究子项目之一。子项目和调查员(PI)可能从另一个NIH来源获得了主要资金，因此可能会出现在其他CRISE条目中。列出的机构是针对中心的，而不一定是针对调查员的机构。参加胆道闭锁研究联盟的任何中心的6个月以下新生儿胆汁淤积(血液中胆红素水平较高)的婴儿将被联系，以参与这项研究。。登记的婴儿将被前瞻性地跟踪最长达10年的时间。有关婴儿的信息将使用标准化表格获得。这些数据将被输入中央数据库，用来描述儿童疾病的自然病史，并确定与不同胆汁淤积性疾病的发病、结果和治疗成功有关的风险因素，特别是胆道闭锁。血液、尿液、胆汁和组织样本将从登记的婴儿中获得，并放置在国家储存库中用于研究目的。作为标准医疗保健的一部分，将在婴儿进行血液测试时获取血液样本。胆汁和组织样本将从作为诊断或治疗程序的一部分收集的未使用部分样本中收集。父母可以选择将自己的血液样本提供给国家储存库用于研究目的。

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. Infants, less that age 6 months, who present with neonatal cholestasis (high levels to bilirubin in the blood) to any of the centers participating in the Biliary Atresia Research Consortium will be contacted to take part in this study. . Enrolled infants will be followed prospectively for a period up to 10 years. Information about the infants will be obtained using standardized forms. These data will be entered into a central database and will be used to characterize the natural history of the child's disease and to identify risk factors related to the onset, outcome and success of treatments for the different cholestatic diseases, with a special emphasis on biliary atresia. Blood, urine, bile and tissue samples will be obtained from enrolled infants and placed in a national repository for research purposes. Blood samples will be obtained when the infant is having blood tested as part of standard medical care. Bile and tissue samples will be collected from unused portions of samples collected as part of diagnostic or treatment procedures. Parents will be given the option to provide samples of their blood to the national repository for research purposes.