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A-LiNK: Improving Outcomes in Autoimmune Liver Disease
Autoimmune Liver Disease Network for Kids (A-LiNK): Using Patient Data to Transform Care and Improve Outcomes for Children, Adolescents, and Young Adults With Autoimmune Liver Disease
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: * Clinical diagnosis of autoimmune hepatitis (AIH) * Clinical diagnosis of primary sclerosing cholangitis (PSC) * Clinical diagnosis of autoimmune sclerosing cholangitis (ASC) Exclusion Criteria: • History of liver transplant
About the study
The Autoimmune Liver disease Network for Kids (A-LiNK) is a multi-institutional group with the mission to deliver the best care to kids with pediatric autoimmune liver disease (AILD).
This study will establish a shared clinical registry and a learning health network for the participating sites focusing on collecting and transmitting clinical measurement data, information about processes, and participation in an improvement collaborative.
Pediatric Autoimmune Hepatitis (AIH) and Primary Sclerosing Cholangitis (PSC), represent a spectrum of AILD which present unique diagnostic and therapeutic challenges.A lack of accepted guidelines for disease monitoring or symptom management results in wide treatment variation with liver transplants indicated in refractory, progressive disease.
The aims of A-LiNK are to:
1.) Create a learning health network focused on patient-centered outcomes research characterized by transparent sharing among centers, common priorities, and feasible plans for implementing new practices; 2) shift from traditional investigator-driven study to a patient and family-centered approach, and 3.) improve clinical outcomes and quality of life for pediatric AILD patients.
What is being tested
- No interventions (other)
Sponsor: Children's Hospital Medical Center, Cincinnati · Participants: 800 · Started: Apr 28, 2022
Contact the study team
- Amy E Taylor, MD · Phone: 513-636-4415
- Cyd M Castro-Rojas, PhD · Phone: 5135170580
Official record on ClinicalTrials.gov — NCT05750498
Locations in the U.S.
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.