BILIARY ATRESIA RESEARCH CONSORTIUM DATABASE

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。 将联系参与胆道闭锁研究联盟的任何中心的新生儿胆汁淤积（血液中胆红素水平高）的6个月以下婴儿参加本研究。. 将对入组婴儿进行长达10年的前瞻性随访。将使用标准化表格获得有关婴儿的信息。 这些数据将输入中央数据库，并将用于描述儿童疾病的自然史，并确定与不同胆汁淤积性疾病（特别是胆道闭锁）的发病、结局和治疗成功相关的风险因素。将从入组婴儿中采集血液、尿液、胆汁和组织样本，并置于国家储存库中用于研究目的。血液样本将在婴儿接受血液检测时获得，作为标准医疗护理的一部分。 胆汁和组织样本将从作为诊断或治疗程序的一部分采集的样本的未使用部分中采集。父母可以选择将他们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.