Childhood Liver Disease Research Network Data Coordinating Center

University Of Michigan At Ann Arbor, Ann Arbor MI

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): Chronic pediatric liver disease is a devastating group of conditions that have a profound effect on children, their families, and our society. Biliary atresia and the other cholestatic liver diseases studied by this network account for over half of liver transplants performed in children in the United States. A better understanding of the diseases studied by this network will help provide better care of patients with chronic liver disease. The gaps in our current knowledge regarding these diseases provide compelling scientific justification for the continuation of ChiLDReN. As stated in the RFA, the primary goal of this proposal is to continue clinical and translational research on rare pediatric liver disease that include: biliary atresia; Alagille syndrome, alpha-1-antitrypsin deficiency, progressive familial intrahepatic cholestasis syndromes, bile acid synthesis defects, mitochondrial hepatopathies, idiopathic neonatal hepatitis, and cystic fibrosis liver disease. It is anticipated that the network will consist of up to 15 clinical sites and a single data coordinating center (DCC). The DCC for the ChiLDReN study is charged with providing coordination, communications and logistical support, clinical study design, centralized data management, biosample management, quality assurance, and analytical support to the research sites and the NIDDK Project Scientist for all ChiLDReN studies. The proposing team is submitting this response to RFA-DK-13-011 to continue as the DCC for the network.