A-LiNK: Improving Outcomes in Autoimmune Liver Disease
This study, called A-LiNK, is an observational study for children with autoimmune liver diseases like autoimmune hepatitis (AIH) and primary sclerosing cholangitis (PSC). It aims to create a shared network to collect information about these conditions, which can be challenging to diagnose and treat. Researchers will gather data on how the diseases progress, how often they relapse, and any complications that arise. The goal is to improve care by understanding current treatments and outcomes. You could be eligible if you have a clinical diagnosis of autoimmune hepatitis, primary sclerosing cholangitis, or autoimmune sclerosing cholangitis, and have not had a liver transplant.
- Study design
- This is an observational study, meaning no new treatments are being tested. It plans to include 800 participants.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants' disease characteristics, relapse rates, and complications will be measured until 2034.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
A-LiNK: Improving Outcomes in Autoimmune Liver Disease
At a glance
Conditions
Where it's being run
8 sites across 7 statesStudy leadership
- Amy E Taylor, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital Medical Center, Cincinnati
Who to contact
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Do you actually qualify for this trial?
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Inclusion
What this trial measures
- Baseline disease characteristics in the population2034
- Disease relapse and biochemical remission rates2034
Biochemical remission = transaminases (ALT/AST) within the upper limit of normal for age
- Complications of disease2034
Including ascites, esophageal variceal bleeding, cholangitis, hepatic encephalopathy, listed for liver transplant, hepatocellular carcinoma, or cholangiocarcinoma
- Side-effects of steroids2034
Including hypertension, diabetes mellitus, low bone mineral density, glaucoma, cataract, overweight, obesity
- Pediatric Quality of Life Inventory (PedsQL 4.0) Generic Core Scales Short Form 152034
Health-related quality of life
- Racial and ethnic disparities2034