Patient Engagement in Pediatric Liver Disease: Experiences From the A-LiNK, PFIC.org, and Starzl Networks

Nov 09 2025
Convention Center: Room 201, Level 2
3:45 PM - 4:45 PM

World Class Speakers

Emily R Perito, MD, MAS
Presenter

Emily R Perito, MD, MAS

University of California San Francisco
AT
Presenter

Amy Taylor, MD

Cincinnati Children's Hospital Medical Center
Melissa Kochanowsky
Panelist

Melissa Kochanowsky

PFIC Network, Inc.
Madelyn Flickinger
Panelist

Madelyn Flickinger

The Starzl Network
Fionna Kopp
Panelist

Fionna Kopp

A-LiNK
James E Squires, MD, MS
Moderator

James E Squires, MD, MS

Children's Hospital of Pittsburgh
Emily Ventura, BSN, RN
Moderator

Emily Ventura, BSN, RN

PFIC Network, Inc.

Description

This session updates the community on the experience and expertise of patient engagement from 3 ongoing collaboratives:
  • The Autoimmune Liver Disease Network for Kids (A-LiNK) and the A-LiNK connections 
  • PFIC.org and their Patient-Centered Outcomes Research Institute (PCORI) funded IMPACT project (identifying research targets by merging patient and clinician treatment information)
  • the Starzl Network for Excellence in Pediatric Transplantation and their PCORI funded PARTNER AD3vance project (patient-centered research in pediatric transplant—engaging families and recipients—adolescent and young adult advisors)
Presenters highlight the importance of patient engagement in setting research agendas, strategies for successful patient engagement, and how patient engagement affects project development and progress.

Journey Maps

Presentations

3:45 PM - 3:55 PM
Nov 09 2025
Washington, D.C.

Patient Engagement in Progressive Cholestatic Liver Disease: Experience of the PFIC.org Network

James E Squires, MD, MS, Presenter
Pediatrics
3:55 PM - 4:05 PM
Nov 09 2025
Washington, D.C.

Patient Engagement in Pediatric Transplantation: Experience of the Starzl Network

Emily R Perito, MD, MAS, Presenter
Pediatrics
4:05 PM - 4:15 PM
Nov 09 2025
Washington, D.C.

Patient Engagement in Autoimmune Liver Disease: Experience of the A-LiNK Network

Amy Taylor, MD, Presenter
Pediatrics

Objectives

  • Discuss the importance of patient engagement in setting research agendas.
  • Examine strategies for successful patient engagement from 3 current collaboratives focused on autoimmune liver disease, progressive familial cholestasis, and pediatric liver transplant.
  • Review how patient engagement has impacted project development and progression based on updates from each the 3 networks discussed.