A-LiNK: Improving Outcomes in Autoimmune Liver Disease

Recruiting now

Conditions studied: Autoimmune Hepatitis, Primary Sclerosing Cholangitis

In brief

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.

Key facts

Study ID

NCT05750498

Run by

Children's Hospital Medical Center, Cincinnati

People needed

800

Starts

2022-04-28

Expected to finish

2033-06-30

Last updated by the study team

2025-07-24

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Clinical diagnosis of autoimmune hepatitis (AIH)
• Clinical diagnosis of primary sclerosing cholangitis (PSC)
• Clinical diagnosis of autoimmune sclerosing cholangitis (ASC)

You may not qualify if…

• History of liver transplant

Where it is running

• Stanford University — Palo Alto, California, United States (enrolling)
• Riley Children's Health — Indianapolis, Indiana, United States (enrolling)
• St. Louis Children's Hospital — St Louis, Missouri, United States (enrolling)
• Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States (enrolling)
• Nationwide Children's Hospital — Columbus, Ohio, United States (enrolling)
• UPMC Children's Hospital of Pittsburgh — Pittsburgh, Pennsylvania, United States (enrolling)
• UT Southwestern Medical Center — Dallas, Texas, United States (enrolling)
• Seattle Children's Hospital — Seattle, Washington, United States (enrolling)

Full record on ClinicalTrials.gov

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