A-LiNK: Improving Outcomes in Autoimmune Liver Disease (ALINK)

Cincinnati Children's Hospital Medical Center

Status: Enrolling

Conditions: Primary Sclerosing Cholangitis; Autoimmune Hepatitis

Treatments: Other: No interventions

Study type: Observational

Funder types: Other

Identifiers

NCT05750498

2020-1019 A-LiNK Prospective

Details and patient eligibility

About

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.

Enrollment: 800 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

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

Trial design

800 participants in 1 patient group

Children and adolescents with Autoimmune Liver Disease

Description:

Pediatric patients with a diagnosis of autoimmune hepatitis, or primary sclerosing cholangitis.

Treatment:

Other: No interventions