A-LiNK: Improving Outcomes in Autoimmune Liver Disease
Part of paid clinical trials in Palo Alto, California.
- Sponsor
- Children's Hospital Medical Center, Cincinnati
- Study ID
- NCT05750498
- Status
- Recruiting
Conditions
- Autoimmune Hepatitis
- Primary Sclerosing Cholangitis
Eligibility Criteria
- Sex
- ALL
- Age
- N/A - N/A
- Healthy Volunteers
- Not accepted
Interventions
- No interventions — OTHERThere are no interventions
Study Details
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.
Key Dates
- Start date
- Apr 28, 2022
- Status verified
- Jul 2025
- Primary completion
- Dec 31, 2032
- Completion
- Jun 30, 2033
Study Design
- Enrollment
- 800 participants (estimated)
Arms
- Arm: Children and adolescents with Autoimmune Liver DiseasePediatric patients with a diagnosis of autoimmune hepatitis, or primary sclerosing cholangitis.
Primary Outcome Measure
Baseline disease characteristics in the population [ Time Frame: 2034 ]
Central Contacts
- Amy E Taylor, MD513-636-4415
- Cyd M Castro-Rojas, PhD5135170580
Locations (8)
| Facility | City | State | ZIP | Site coordinators |
|---|---|---|---|---|
| Stanford University | Palo Alto | California | 94304 | Leina Alrabadi, MD (PRINCIPAL_INVESTIGATOR) Jennifer Halma, MD (SUB_INVESTIGATOR) |
| Riley Children's Health | Indianapolis | Indiana | 46202 | Ann Klipsch, RN Kyla Tolliver, MD (PRINCIPAL_INVESTIGATOR) |
| St. Louis Children's Hospital | St Louis | Missouri | 63110 | Sakil S Kulkarni, MD (PRINCIPAL_INVESTIGATOR) |
| Cincinnati Children's Hospital Medical Center | Cincinnati | Ohio | 45229 | Amy E Taylor, MD (PRINCIPAL_INVESTIGATOR) |
| Nationwide Children's Hospital | Columbus | Ohio | 43205 | Alexander Weymann, MD (PRINCIPAL_INVESTIGATOR) |
| UPMC Children's Hospital of Pittsburgh | Pittsburgh | Pennsylvania | 15224 | James E Squires, MD (PRINCIPAL_INVESTIGATOR) Mary H Ayers, MD (SUB_INVESTIGATOR) |
| UT Southwestern Medical Center | Dallas | Texas | 75390 | Sindhu Pandurangi, MD (PRINCIPAL_INVESTIGATOR) |
| Seattle Children's Hospital | Seattle | Washington | 98105 | Katelyn M Saarela, DO (PRINCIPAL_INVESTIGATOR) |
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