A PROSPECTIVE DATABASE OF INFANTS WITH CHOLESTASIS

胆汁淤积婴儿的前瞻性数据库

• 批准号: 7604275
• 负责人: PETER Frank WHITINGTON
• 金额: $ 2.97万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-12-01 至 2007-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7604275
• 关键词: PROSPECTIVE; DATABASE; INFANTS; CHOLESTASIS

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. Biliary atresia is the leading cause of morbidity and mortality from pediatric liver disease and is the most common indication for pediatric liver transplantation. Despite its clinical importance, little is known of a wide range of fundamental issues regarding biliary atresia. Optimal approaches to the medical management of biliary atresia are unknown. No prospective randomized trials of important aspects of the care of children with biliary atresia have been performed. The majority of published data regarding biliary atresia is anecdotal and based upon a single center experience. Comprehensive registries of the management and outcome of biliary atresia do not exist. The Biliary Atresia Research Consortium (BARC) is an NIH-funded network of 10 clinical sites and a data coordinating center whose goal is to study biliary atresia, neonatal hepatitis and other cholestatic diseases in the infant. The primary objectives of this research are to establish (1) a database containing clinical information and (2) a repository of blood and tissue samples from children with neonatal liver diseases such as biliary atresia and neonatal hepatitis to facilitate research in these important liver problems in children. This study will: 1. collect detailed clinical and demographic information about each subject at enrollment and during follow up, 2. obtain and store blood and urine samples from the subject at diagnosis and during follow up, 3. obtain and store liver and biliary tissue and bile that are removed during diagnosis (i.e., biopsy) or at time of surgery or transplant and that are not needed for diagnostic purposes 4. collect demographic and medical history of parents at enrollment, and 5. obtain and store blood from the biological parents at enrollment.

该副本是利用众多研究子项目之一 由NIH/NCRR资助的中心赠款提供的资源。子弹和 调查员（PI）可能已经从其他NIH来源获得了主要资金， 因此可以在其他清晰的条目中代表。列出的机构是 对于中心，这不一定是调查员的机构。 胆道闭锁是小儿肝病发病和死亡率的主要原因，是小儿肝移植的最常见指示。 尽管其临床重要性，但鲜为人知的有关胆道闭锁的基本问题很少。 胆道闭锁的医疗管理的最佳方法尚不清楚。 尚未进行胆汁闭锁儿童护理的重要方面的前瞻性随机试验。 关于胆道闭锁的大多数已发表数据都是轶事，并且基于单个中心体验。 不存在胆道闭锁的管理和结果的全面登记。 胆道闭锁研究联盟（BARC）是NIH资助的10个临床部位和一个数据协调中心的网络，其目标是研究胆道闭锁，新生儿肝炎和婴儿中的其他胆固醇疾病。 这项研究的主要目的是建立（1）包含临床信息的数据库以及（2）来自新生儿肝病儿童的血液和组织样本的存储库，例如胆道闭锁和新生儿肝炎，以促进儿童这些重要肝脏问题的研究。 这项研究将： 1。收集有关每个主题的详细临床和人口统计信息，并在随访期间， 2。在诊断和随访期间从受试者中获取并存储血液和尿液样本， 3。在诊断期间或在手术或移植时获得并储存肝脏和胆汁组织和胆汁 4。收集招生时父母的人口统计学和病史， 5。入学时从亲生父母那里获取血液。