ABOUT THE NETWORK

The Childhood Liver Disease Research and Education Network (ChiLDREN) is a collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations. The ChiLDREN Network has clinical sites and research labs in the US and Canada, and also includes a research lab in London. These sites are working together to improve the lives of children and families dealing with rare liver diseases.

The ChiLDREN Network combines the Biliary Atresia Research Consortium (BARC) and the Cholestatic Liver Disease Consortium (CLiC), as well as new studies on cystic fibrosis liver disease (CFLD). The ChiLDREN Network was developed to support the discovery of new diagnostics, etiologic, and treatment options for children with liver disease, and those who undergo liver transplantation. The Network also supports training for the next generation of investigators in rare, pediatric liver diseases.

One of the primary goals of the Network is to provide a way for patients to join with doctors and researchers by participating in research studies. The greater the collaboration between doctors and patients and their families, the more we can learn about rare liver diseases. This important first step is necessary if we are to find new and better treatments.

Infants, children, and young adults with cholestasis (blockage of bile flow from the liver) who receive their medical care at one of the participating ChiLDREN centers may be eligible to enroll in current ChiLDREN studies. Patients who receive their medical care at other clinical facilities may also be eligible for ChiLDREN studies if they are able to visit a ChiLDREN site for regular research visits.

ChiLDREN is currently studying the following diseases.  For more information on specific studies that may interest you, click on the specific disease below:

• Alagille syndrome
• Alpha-1-antitrypsin deficiency
• Bile acid synthesis and metabolism defects
• Biliary Atresia
• Cystic Fibrosis liver disease
• Idiopathic neonatal hepatitis
• Mitochondrial hepatopathies
• Progressive familial intrahepatic cholestasis

Most ChiLDREN studies are run at 15 clinical sites in the US and Canada. There are two additional study sites that run only specific studies. The ChiLDREN Data Center is located at the University of Michigan. For information on ChiLDREN sites, please click here.

• The ChiLDREN Network is sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), a division of the National Institutes of Health. The Network also receives funding for specific studies from the Cystic Fibrosis Foundation and the Alpha-1 Foundation.
  

• The ChiLDREN Data Coordinating Center (DCC) is located at the University of Michigan in Ann Arbor and operates under the direction of Principal Investigator John C. Magee, M.D.   The DCC provides support for the network of clinical sites studying biliary atresia, cholestatic liver disease and cystic fibrosis in infants and children.  The DCC is responsible for establishing and maintaining the database of information for all ChiLDREN studies.  The DCC collaborates with clinical investigators on study design and analysis, and provides leadership in the operational aspects of the study, including database development, data entry and management, data collection forms and processes, manuals of operations, and adherence with regulatory and protocol requirements.

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