A-LiNK: Improving Outcomes in Autoimmune Liver Disease (NCT05750498)
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
๐ฉบ Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Stanford University โ Palo Alto, California
๐งช Interventions in This Study
- No interventions (OTHER)
๐ "Do I Qualify?" โ 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria โ
๐ All Participating Trial Locations (8 Sites)
- Stanford University โ Palo Alto, California
- Riley Children's Health โ Indianapolis, Indiana
- St. Louis Children's Hospital โ St Louis, Missouri
- Cincinnati Children's Hospital Medical Center โ Cincinnati, Ohio
- Nationwide Children's Hospital โ Columbus, Ohio
- UPMC Children's Hospital of Pittsburgh โ Pittsburgh, Pennsylvania
- UT Southwestern Medical Center โ Dallas, Texas
- Seattle Children's Hospital โ Seattle, Washington
๐ Contact the Study Coordinator
Phone: (513) 636-4415
Email: amy.taylor@cchmc.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
๐ฐ Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA ยง 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Autoimmune Hepatitis
- A Trial of Inebilizumab in Participants With Autoimmune Hepatitis โ Little Rock, Arkansas
- Belimumab in Autoimmune Hepatitis โ Calgary, Alberta
- Mediterranean Diet Versus Western Diet on Fatigue in Autoimmune Hepatitis Patients โ Indianapolis, Indiana
Explore by condition: All Autoimmune Hepatitis clinical trials
๐ก How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.