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

Status: Recruiting
Location: See all (8) locations...
Intervention Type: Other
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• Clinical diagnosis of autoimmune hepatitis (AIH)

• Clinical diagnosis of primary sclerosing cholangitis (PSC)

• Clinical diagnosis of autoimmune sclerosing cholangitis (ASC)

Locations
United States
California
Stanford University
RECRUITING
Palo Alto
Indiana
Riley Children's Health
RECRUITING
Indianapolis
Missouri
St. Louis Children's Hospital
RECRUITING
St Louis
Ohio
Cincinnati Children's Hospital Medical Center
RECRUITING
Cincinnati
Nationwide Children's Hospital
RECRUITING
Columbus
Pennsylvania
UPMC Children's Hospital of Pittsburgh
RECRUITING
Pittsburgh
Texas
UT Southwestern Medical Center
RECRUITING
Dallas
Washington
Seattle Children's Hospital
RECRUITING
Seattle
Contact Information
Primary
Amy E Taylor, MD
amy.taylor@cchmc.org
513-636-4415
Backup
Cyd M Castro-Rojas, PhD
cyd.castrorojas@cchmc.org
5135170580
Time Frame
Start Date: 2022-04-28
Estimated Completion Date: 2033-06-30
Participants
Target number of participants: 800
Treatments
Children and adolescents with Autoimmune Liver Disease
Pediatric patients with a diagnosis of autoimmune hepatitis, or primary sclerosing cholangitis.
Sponsors
Leads: Children's Hospital Medical Center, Cincinnati

This content was sourced from clinicaltrials.gov