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What is BARC?

BARC Is a collaborative national effort to study the etiology, pathogenesis, diagnosis, and treatment of biliary Atresia, a rare disease. No single center in the US sees more than 8 - 12 new cases per year and there has not been a national cooperative effort in the past. There has been little progress in understanding the pathogenesis and etiology despite enormous progress in genomics, cell biology and other fields of medicine. Thus a principal goal of BARC is to translate advances of basic science in cell biology, pharmacology, the human genome project, etc. into clinical application of human diseases. Each of the 10 centers has at least one pediatric hepatologist, surgeon, radiologist, pathologist, and research coordinator and there is a Data Coordinating Center. The principal BARC activities are as follows:

  • Prospective longitudinal study-database to study the etiology, natural history, and treatment of cholestatic liver disease
  • Tissue and sample repository including serum, urine, liver and biliary tissue, and lymphocytes (the latter from both parents and infants) to provide materials for scientific studies of these diseases
  • A clinical trial of the effect of high dose peri-operative corticosteroids on improving outcome
  • Other retrospective and prospective clinical studies
  • Studies of pathogenesis including viral infection; genetic mutations (laterality genes, cytokeratins, Jagged 1, Notch, alpha-1 antitrypsin); immune and autoimmune mechanisms, and epidemiology
  • Ancillary studies in which scientists can apply state-of-the art technologies to the pathogenesis of biliary atresia

 

   
           
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