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
Kyla Tolliver
Primary Investigator
Brief description of study
What is the purpose of this study?
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.
Detailed description of study
What will happen during the study?
- There are no study interventions
- All patients with a clinical diagnosis of Autoimmune Hepatitis (AIH), Primary Sclerosing Cholangitis (PSC), and Autoimmune Sclerosing Cholangitis (ASC).
- Patient recruitment will be conducted by the care centers participating in the registry.
- This also includes the recruitment of Spanish and other language-speaking patients.
- Participants who are enrolled in ImproveCareNow and who are eligible for A-LiNK will be separately consented to this study.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Autoimmune Hepatitis, AIH, Primary Sclerosing Cholangitis, PSC, Autoimmune Sclerosing Cholangitis, ASC, Riley
-
Age: 1 years - 17 years
-
Gender: All
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
