Alpha Stories

Published on Tuesday, June 8, 2010

Childhood liver disease studies enrolling patients; some travel funds available to eligible families

The Childhood Liver Disease Research and Education Network (ChiLDREN) is enrolling children now for vital research studies on cholestatic liver diseases of children.

In cholestatic liver disease, the flow of bile from the liver into the digestive tract is obstructed or little or no bile is secreted. Alpha-1 Antitrypsin Deficiency is an example of a cholestatic liver disease.

CHILDREN is a team of doctors, nurses, scientists, research coordinators, and Patient Advocacy (support) Groups throughout the U.S., Canada and England, working together to improve the lives of children and families dealing with rare, cholestatic liver diseases.

ChiLDREN has 15 clinical sites enrolling in all studies (see the links at bottom for a list of sites and contact information), and an additional study site enrolling Alpha-1 patients into the LOGIC study.

Some ChiLDREN sites have travel funds and other resources available to support families who might otherwise be unable to visit for research purposes. Contact the ChiLDREN site nearest you for more information.

The ChiLDREN team studies:

  • Alpha-1-antitrypsin (a-1AT) deficiency
  • Alagille syndrome (AGS)
  • Bile acid synthesis and metabolism defects
  • Biliary atresia
  • Cystic fibrosis liver disease
  • Idiopathic neonatal hepatitis
  • Mitochondrial hepatopathies
  • Progressive familial intrahepatic cholestasis (PFIC)

The purpose of this network is to provide a way for people with these rare diseases to join with doctors and researchers and participate in research.

The greater this cooperation, the more researchers can learn about cholestatic liver diseases and find new and better treatments.

ChiLDREN can help the parents of children with liver disease:

  • Obtain helpful information about these diseases
  • Stay up to date with new developments
  • Become aware of research opportunities
  • Connect with Patient Advocacy Groups,

ChiLDREN is funded by the National Institutes of Health’s National Institute of Diabetes and Digestive and Kidney Diseases. For more information, visit The ChiLDREN Network site

You may also contact Joan Hines at 720-777-2598 or email Joan Hines

The studies now enrolling 

Study enrollment sites