BILIARY ATRESIA RESEARCH CONSORTIUM DATABASE

点击翻译按钮获取中文摘要

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.