The Autoimmune Liver disease Network for Kids

A-LiNK's overall goal is to improve the care and health of children and adolescents with autoimmune hepatitis (AIH), autoimmune sclerosing cholangitis (overlap syndrome), and primary sclerosing cholangitis (PSC). As participating centers work toward achieving this goal, they organize their work around a number of specific aims and activities related to improving care processes and outcomes. Pediatric autoimmune liver disease (AILD) is a collective term for a spectrum of liver-based diseases including AIH, autoimmune sclerosing cholangitis (overlap syndrome), and PSC. Importantly, a complex but well-established relationship between AILD and inflammatory bowel disease (IBD) exists where concurrent disease is frequently established. 

ImproveCareNow (ICN) is a Learning Health Network of more than 100 pediatric inflammatory bowel disease (IBD) care centers in the US and internationally, that are working together to improve the health, care and cost of children and adolescents with IBD through improvement science, research and innovation.  These centers, which include 40 of the top 50 pediatric GI programs and all 10 of the Honor Roll children’s hospitals in the US, have 950 pediatric gastroenterologists and 30,000 pediatric IBD patients. Notably, it is estimated that approximately 20% to 30% of individuals with IBD will have persistent liver enzyme elevation, suggesting potential hepatobiliary co-morbidity.

The aim of A-LiNK is to establish a novel collaborative and infrastructure partnership with ICN that will enable improved peer-to-peer collaboration across sub-specialties; designing and implementing a pediatric AILD-specific trailblazing community that eliminates boundaries between clinical care, research, and improvement, and engages multi-center participants as part of one system. We expect that this effort will simultaneously improve care, spawn innovation, and accelerate research in the field of pediatric AILD, all while expanding the existing, established footprint that is the ICN Network.

 

 

A-LiNK Connections: Parent Community

As parents and guardians of children with AILD, the A-LiNK Connections Parent Community is committed to enhancing the quality of life for the young people and their families who live with AILD. In partnership with ImproveCareNow (a Learning Network focused on improving the lives of kids with IBD) and other pediatric liver care center teams, the A-LiNK Connections Parent Community empowers patients with AILD and their families to thrive in their lives by improving the quality and outcomes of their care.

You can make a difference! If you would like to be part of the A-LiNK Connections Parent Community as a patient or parent: please fill out this sign-up form.

For more information about being a Parent Leader for this community, please visit this page and discuss with your care center.

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