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

What this Trial Is About

Researchers are building a network called the Autoimmune Liver disease Network for Kids (A-LiNK) to improve care for children with autoimmune liver diseases such as autoimmune hepatitis (AIH) and primary sclerosing cholangitis (PSC). These conditions present unique challenges in diagnosis and treatment, and there is currently no standard approach for monitoring or managing symptoms. The network aims to create a shared registry and collaborative learning environment to enhance patient-centered outcomes. This observational study involves pediatric patients diagnosed with AIH, PSC, or autoimmune sclerosing cholangitis (ASC). There are no treatments or interventions being tested. Instead, the study focuses on collecting clinical data and information about care processes across participating centers, fostering transparent data sharing, and engaging patients and families in research priorities to improve clinical outcomes and quality of life. Participants will contribute clinical measurement data through the shared registry, which will be used to track disease characteristics, relapse rates, complications, steroid side effects, and quality of life using tools like the Pediatric Quality of Life Inventory (PedsQL 4.0). The study also examines racial and ethnic disparities. The research will continue through 2034, aiming to advance understanding and care for children and young adults with autoimmune liver disease.

A-LiNK: Improving Outcomes in Autoimmune Liver Disease