A Learning Health System for Pediatric Liver Transplant: The Starzl Network for Excellence in Pediatric Transplantation : Journal of Pediatric Gastroenterology and Nutrition

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Original Articles: Hepatology

A Learning Health System for Pediatric Liver Transplant: The Starzl Network for Excellence in Pediatric Transplantation

Perito, Emily R.; Squires, James E.; Bray, David; Bucuvalas, John§; Krise-Confair, Cassandra; Eisenberg, Elizabeth; Gonzalez-Peralta, Regino P.||; Gupta, Nitika; Hsu, Evelyn K.#; Kosmach-Park, Beverly; Lobritto, Steven∗∗; Logan, Beth; Mohammad, Saeed††; Ng, Vicky L.‡‡; Pillari, Tony§§; Rasmussen, Sara||||; Shemesh, Eyal§; Soltys, Kyle; Szolna, Jonathan; Superina, Riccardo††; Tunno, John; Mazariegos, George V.

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Journal of Pediatric Gastroenterology and Nutrition 72(3):p 417-424, March 2021. | DOI: 10.1097/MPG.0000000000002974
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What Is Known/What Is New

What Is Known

  • There is significant intercenter variability in how centers care for pediatric liver transplant recipients and candidates. Little is known about how these variations in care relate to key outcomes, or about what practices might produce the best outcome for a given child.
  • In transplant more broadly, we have not fully integrated the voice and priorities of patients and families into our research agenda.
  • Learning health systems have enabled multicenter efforts to support continuous improvement and patient-centered care, have reduced practice variability, and have improved outcomes in other pediatric chronic illnesses—including inflammatory bowel disease, heart failure, and renal diseases.

What Is New

  • The Starzl Network for Excellence in Pediatric Transplantation is the first learning health system focused on pediatric liver transplant. The Starzl Network for Excellence in Pediatric Transplantation is a partnership of providers, families, and other stakeholders with shared priorities and a shared agenda for innovation in clinical care.
  • Increasing information-sharing and collaboration between transplant centers, inviting family and other stakeholder input, and reviewing initial data on practice variability has allowed SNEPT to identify 4 priority areas, initiate improvement projects within each, and develop network and data infrastructure to support sustainable work.
  • SNEPT aims to identify best practices, focus on patient and family needs, and improve outcomes for children before, through, and for a lifetime following pediatric liver transplant.


Learning health systems (LHS), as described by the Institute of Medicine in 2006, are intended to enable “continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience (1,2).” LHS aim to integrate research, improvement, management, and patient care such that every patient receives “the right care at the right time….every time (3).” Critical to a successful LHS is the integration of all stakeholders that utilize and interact with the system, in its construction and implementation. This includes patients, families, medical providers, administrators, representatives from supporting industries, and policymakers.

In constructing and sustaining an LHS, stakeholders—including providers, patients, and families from multiple sites—come together to identify challenges. As the relationship among sites develops, trust emerges. Variations in care are recognized, reviewed, and considered by stakeholders as opportunities to learn from each other and improve. Improvement efforts can be rapidly launched. Although the approach lacks the rigor of formal clinical trials, change is accelerated, crowdsourcing is leveraged, and variation can help to drive strategies. In this way, the LHS model has been successfully utilized in collaboratives organized around other pediatric chronic diseases (4), including inflammatory bowel disease (ImproveCareNow) (5), heart failure (Advanced Cardiac Therapies Improving Outcomes Network, ACTION) (6,7), and kidney disease (Improving Renal Outcomes Collaborative, IROC, IROCnow.org) (4,8). We sought to apply this strategy to pediatric liver transplantation by building a new multicenter consortium: the Starzl Network for Excellence in Pediatric Transplantation (SNEPT). In this report, we review opportunities identified over our first 2 and prospects for future Network initiatives.


SNEPT was founded in 2017 as a novel LHS devoted to pediatric liver transplantation. It is the first multicenter effort by pediatric liver transplant families and providers to develop shared priorities and a shared agenda for best practices and care innovation (9). (Fig. 1) Our initial mission is to unite big data, technology, patient advocates, and transplant thought leaders to deliver the best care and develop new, scalable solutions to pediatric liver transplantation's most challenging problems. On the basis of LHS principles, we have focused on 4 actionable items that address barriers to providing “the right care at the right time” to every child across the spectrum of pediatric liver transplant practice:

  • 1. Facilitating transparency of practice variation and connection of practices to patient outcomes.
  • 2. Harnessing existing datasets to reduce the burden of tracking outcomes.
  • 3. Incorporating patient-reported outcomes (PROs) into outcome metrics.
  • 4. Accelerating the implementation of knowledge into clinical practice.
Starzl Network for Excellence in Pediatric Transplantation, founding pediatric transplant centers.

Over the last 2 years, LHS principles guided SNEPT development. Table 1 outlines the architecture of an LHS and describes SNEPT's progress in each dimension (10,11).

TABLE 1 - Building the Starzl Network as a learning health system
LHS dimension Aim Specific tasks Starzl Network progress to date
Goals Identify goals and priorities for the LHS State LHS missionChoose consensus priorities for care improvementIdentify core strategies that LHS will use in improvement efforts Created consensus mission statementCollaboratively chose 4 priority projects (see TABLE 2)Formed working group for each project
Social Build a community grounded in collaboration, transparency, innovation, and continuous learning Establish organizational structureBuild trusting relationshipsDefine decision-making processesFacilitate ongoing interactions to ensure collaboration, continued goals alignment Established Patient and Family Voice (PFV), with leadership and representatives from each center.Assigned Provider and PFV leads to each Working GroupHeld bimonthly conference calls for project updates and feedbackAnnual in-person meetings 2018 and 2019, including providers, families, and other stakeholders
Scientific Enable learning, innovation, and discovery Design feasible QI projects within LHS priority topicsRun learning cycles: collect data, analyze, identify areas for improvement, implement change, repeat cycleImplement and disseminate evidence-based best practices Provided educational sessions on LHS principles and QI strategies at in-person meetings to families and providers, including case study presentations from other LHSEstablished workgroups for each priority projectShared existing center care protocols for 4 priority projectsIdentified initial objectives and started quality improvement projects for each workgroup (see TABLE 2)
Technical Establish sources of reliable, analyze-able data that will inform learning cycles Establish a database, processes for data acquisition, analysis, quality assuranceEnsure database accurately tracks predictors/outcomes of interest Utilized Basecamp platform for communication, and to ensure transparency of works-in-progressExplored several existing data sources that could be utilized/combined as a foundation for databaseInvestigated app-based options for collection of patient-reported outcomes, with possible linkage to electronic health record data
Ethical Establish a moral framework/guiding principles Ensure that LHS learning cycles and other activities are conducted ethically, accounting for both clinical and research ethical principlesProtect patient rights’ and privacy Incorporated PFV representatives into design of guiding principles, working groups, and grant initiativesCreated data use agreement, with contracting underway for all participating sitesCoordinating center IRB initially approved at Pittsburgh, process underway at other sites
LHS = learning health systems; PFV = Patient and Family Voice.On the basis of Lessard et al (10).

In 2018, stakeholders convened to define SNEPT's priority projects (9). We identified fundamental challenges that our LHS needed to address. Two questions were posed: what problem would you like to solve, or question would you like to answer in transplant? What troubling issues or problem in the transplant journey most surprised you? Four projects emerged as impactful, feasible priorities: immunosuppression, peri-transplant anti-coagulation, transition of care, and assessing PROs/quality of life. Working groups for each project formed to develop solutions. A Patient and Family Voice (PFV) working group was founded to ensure a strong and sustainable voice for these key stakeholders. PFV representatives are incorporated into all 4 project groups (Table 2).

TABLE 2 - Starzl Network priority project working groups
Working group Goals Initial objectives Accomplishments
Patient and Family Voice (PFV) To support and unite the global pediatric transplant community through collaboration with transplant community stakeholders.To develop and implement innovative ideas.To advocate and improve the lives of all pediatric transplant patients and their families To integrate patients and families within all Starzl Network activities including executive LHS network planning and individual project working groups Finalized PFV Mission StatementFormalized PFV leadership structure including roles and responsibilities of 3 lead representatives and center delegatesDeveloped onboarding process for new PFV membersIdentified PFV passion and pain points associated with various time points throughout the transplant process (ie, pre-, peri-, short-term post-, long-term post-transplant)Provided direct patient/family feedback to project teams regarding implementation strategies (ie, PeLTQL) and project outcomes (ie, Transition of Care)
Peri-operative anti-coagulation To optimize anti-coagulation practices and monitoring after liver transplant.To minimize thrombotic complications.To promote efficiency and excellence in surgical practices that enhance organ availability in children To investigate current protocols for intra-operative monitoring of arterial and portal flow and coagulation status.To associate anti-coagulation with intra-and post-operative outcomes. Shared post-transplant anti-coagulation protocols across Starzl centersDesigned and piloted data collection forms to track impact of peri-operative anti-coagulation on outcomes (eg, hepatic artery, portal vein thrombosis).Created a listserv to facilitate transplant surgeon communication, particularly for discussion of difficult casesDeveloped a multidisciplinary team to broaden the potential scientific understanding of peri-operative thrombotic and bleeding complications.
Immunosuppression To optimize immunosuppression—providing enough to protect the liver allograft while minimizing burden on the child and family. To explore how variation in early immunosuppression regimen impacts immunosuppression-related outcomes. Shared post-transplant immunosuppression protocolsIdentified key areas of variation in protocols  Use of antibody induction, +/− corticosteroids  Addition of mycophenolate mofetilDesigned benchmarking report, based on SPLIT registry data that centers can use to evaluate the impact of early immunosuppression (0–3 months) on early outcomes (first year: survival, rejection, infections, medication adverse effects) Creating survey to ask patients and families what aspects of immunosuppression create the biggest burden on their lives
Quality of life To systematically hear patient (and parent) voices in care provided after liver transplant To assess feasibility of using a pediatric liver transplant-specific quality-of-life tool (PeLTQL) in Starzl pediatric liver transplant clinics Completed a pilot study administering the PeLTQL to 30 patient-parent dyads at 5 sites, solicited feedback from patients, parents and clinical team members via Survey-Monkey, implemented an excel calculator for expedited scoring.Participating centers shared strategies for successfully implementing the PeLTQL in their clinics, with additional 84 completed patient-patient dyads at all sites.Developed an e-PeLTQL with automated scoring for easier utilization in the clinic setting.
Transition of care To identify predictors of successful transition of care and develop evidence-based guidelines for preparing adolescents, young adults, and their parents for successful transition To assess the current state of transition programs within the Starzl Network.To track outcomes of patients transferred from pediatric to adult healthcare Surveyed Starzl centers on existing practices in transition of transplant care from the pediatric to adult care team. Areas assessed included: program status, interventions, team involvement, adult provider engagement, challenges, and monitoring outcomes.Currently assessing the number of patients transferred to adult care by each center over the last 5 years and their outcomes.
LHS = learning health systems; PeLTQL = Pediatric Liver Transplantation Quality of Life; PFV = Patient and Family Voice; SPLIT = Society for Pediatric Liver Transplantation registry.


Over the last 50 years, liver transplantation has evolved from an experimental intervention to the standard of care for children with end-stage liver disease, several metabolic and congenital liver diseases, tumors, and acute liver failure. Although it remains relatively rare compared with adult liver transplantation, its practice is distributed widely at centers across North America. In 2018, 563 children were transplanted across 53 different transplant centers—with 36% of these centers transplanting less than 5 children that year (12). This distribution increases children's access to transplant but it also creates inherent variability in transplant care and outcomes.

Organ Procurement and Transplantation Network's (OPTN) data on all US transplants shows that waitlist and post-transplant survival varies significantly by transplant center volume, by age (13) and disease characteristics (14), and by patient characteristics that are amenable to intervention—including functional status (15), Pediatric End-Stage Liver Disease (PELD) exception points (16), and growth failure (17).

Key additional data describing variability in pediatric liver transplant outcomes have come from the Society for Pediatric Liver Transplantation registry (SPLIT, previously Studies in Pediatric Liver Transplantation). Initiated in 1995, the SPLIT registry has been invaluable for describing trends and remaining barriers to optimal outcomes in pediatric liver transplantation (18–20). The current registry includes peri-transplant and post-transplant data on almost 2000 children from 39 centers (20), highlighting that multicenter participation in a collaborative effort is feasible, and viewed as valuable, by most pediatric transplant centers. But recent data from the SPLIT registry demonstrates that average waitlist mortality ranges from 1.4% to 8.1%, “failure to rescue,” the average rate of mortality in children with post-transplant complications, ranges from 4.6% to 14.3% (14). Furthermore, there is significant variability in how centers care for children and adolescents on the liver waitlist, peri-operatively, and post-transplant (21). Many aspects of care are protocol-driven but protocols vary widely between centers. Little is known about how these variations in care relate to variations in outcome, and about what practices might produce the best outcome for a given child.


In 2018, 30% of pediatric liver transplant recipients received an interleukin-2 receptor antagonist (IL-2RA) as post-transplant induction, 14% a T-cell-depleting agent, and 56% no antibody. Approximately 40% receive mycophenolate mofetil, and almost all receive tacrolimus (22). A recent analysis identified transplant center as the strongest predictor of whether adult liver transplant recipients receive IL-2RA or T-cell-depleting agents (23). Although center preference and historical practice are presumed drivers, definitive sources of this variability have not yet been systematically assessed for children.

Peri-transplant Anti-coagulation

In a recent survey of 31 pediatric liver transplant centers, 94% used anti-coagulation protocols for prevention of thrombosis, 88% used heparin. Which children are routinely anti-coagulated, which combination of medications are used, strategies for monitoring, length of use, and approach to suspected hepatic artery thrombosis, however, varied substantially between centers (24).

Transition of Care

Young adults’ transition of care from pediatric to adult transplant providers are recognized as a risk for loss to follow-up, nonadherence, and graft loss. Almost 15% of pediatric liver transplant recipients are lost to follow-up by 10 years post-transplant (20). Transition readiness is approached very differently across centers. A 2018 survey of US pediatric centers identified variability in transition readiness assessment, age of transfer, and formal transition program. Some centers enroll children into a transition program at 13 years, with at least annual assessment and education, others start with young adults 1 year before transition (25). The impact of these different approaches on post-transition outcomes is not known.

This variability in transplant care protocols and in outcomes raises 2 possibilities. First possibility is that some transplant care protocols and/or center practices lead to better outcomes than others. This suggests that evidence-based best practices could be identified, and disseminated, to improve transplant outcomes for children at all centers. Second possibility is that there are multiple transplant care strategies that could lead to similar outcomes for a patient. For example, multiple immunosuppression regimens could have comparable rates of rejection and complications. The first possibility is likely true in some instances, and the second in others. Both possibilities create opportunities for more personalized care for pediatric transplant recipients, shared decision-making with families, and cost-saving efforts.

Assessing Patient-reported Outcomes, Such As Quality of Life

Neither the OPTN nor SPLIT registries include PROs. Consequently, the patient and family perspective on the impact of liver disease and transplantation on their daily lives and well-being is lacking. As the ultimate goal of health care is to help patients live high-quality productive lives, it is paramount to include PROs data as foundational in research and quality improvement efforts.


Although the pediatric liver transplant community has reported on variability in practices and outcomes, we lack a systematic approach to understanding its sources and its impact on outcomes. A multicenter infrastructure focused on information-sharing and quality improvement is needed, an organized group of centers that could pilot and refine strategies for moving evidence-based practices into routine clinical usage. In transplant more broadly, we have not fully integrated the voice and priorities of patients and families into our research agenda (26). Through SNEPT, we are actively working to address these gaps. By increasing information-sharing and collaboration between transplant centers, inviting family and other stakeholder input, and creating infrastructure to support continuous quality improvement across transplant care, SNEPT hopes to identify best practices, meet patient and family needs, and improve outcomes for children. (Fig. 2) We aim to develop standards of care that are feasible, acceptable, and responsive to the needs of patients and families. This has been accomplished through including patient and families at all levels of LHS activity, including executive planning within the LHS, project identification, project selection, development of PROs, and project execution. To facilitate rapid, nimble and focused project work and trusting relationships between centers and between different stakeholder groups, we started with a small group of centers. We believe that by establishing effective engagement strategies, productive processes for QI projects, and useful outcome-tracking tools, additional centers will be interested in joining SNEPT. An onboarding process for additional centers is being currently developed.

Starzl Network for Excellence in Pediatric Transplantation, learning health system working model. Following a Design and Development Phase where stake holders collaborate to identify meaningful outcomes and project design, iterative Cycles of Improvement are undertaken combining community learning sessions, data collection and integration, and application of quality improvement methods. The Network infrastructure enables connectivity, such that information can be disseminated and improvement quantified.

Having identified avenues for advancement, we next instituted strategies to address the barriers identified within each project scope.

Facilitating Transparency of Practice Variation, Connecting Practices to Patient Outcomes

All SNEPT providers, family members, and other stakeholders, have access to SNEPT's BaseCamp. BaseCamp is a password-protected, internet-based information-sharing portal that includes file-sharing and “chat” features. All working groups include transplant providers and family representatives. Each working group holds regular conference calls to discuss interim results and plan next steps.

Participating centers posted their immunosuppression, perioperative anti-coagulation, and transition-of-care protocols on BaseCamp. Practice differences between centers were identified and discussed. Each working group collaboratively designed data collection/reporting forms to capture the impact of these variable practices on outcomes. This transparency, and the coordinated effort to identify evidence-based best practices and eventually reduce variability, is novel within the pediatric liver transplant community.

Network-wide video conference calls occur twice monthly. Working groups present their progress quarterly, and feedback discussions follow. An annual meeting convenes the entire network, this has been in-person but may continue virtually.

Incorporating Patient-reported Outcomes Into Outcome Metrics

Fully integrating patients and families into the projects has pushed our work in novel and exciting patient-centered directions (Table 2). The Quality-of-Life group has focused on identifying and disseminating strategies for integrating the Pediatric Liver Transplantation Quality of Life (PeLTQL) survey into routine practice at SNEPT centers (27). PeLTQL is a 26-item survey designed and validated to collect PROs from pediatric transplant recipients and their families. Initial family interest about systematic incorporation of PROs into routine liver transplant care prompted a pilot feasibility study at SNEPT sites (Table 2). On the basis of center feedback, iterative improvements—including building an automatically scored electronic version, have subsequently been developed.

The Immunosuppression group recognized that existing data on outcomes lacked PROs, specifically the burden that different medication regimens place on patients and families. They are designing a survey to collect PROs and planning with the Patient and Family Voice group on survey dissemination. Network-wide, collaborations are being explored with companies that offer mobile-based interfaces for collecting PROs and providing outcomes data to patients and families.

In addition, SNEPT aims to deepen and expand the integration of family members and patients into every aspect of our work. The PFV is creating organizational structure and orientation materials to facilitate the expansion and diversity of patient and caregiver input into SNEPT's work. A PFV representative is on the network's Executive Steering Committee. Our PFV center leads are working to develop onboarding materials to recruit a diverse patient and family group that is representative of the pediatric liver transplant community.

Harnessing Existing Datasets to Reduce the Burden of Tracking Outcomes

Although the OPTN and SPLIT registries provide critical insight into transplant care and outcomes, both require manual extraction and data transfer from the electronic health record (EHR) into registry-specific data collection forms. This helps not only with data uniformity but also creates a burden on transplant centers.

For efficiency and sustainability, we are exploring ways to leverage existing data for a SNEPT database. The UNOS/OPTN registry, a federally mandated, transplant-specific repository, will serve as the foundation for our shared database. As other LHS have done, we aim for a “data-in-once” approach for clinical care and network goals—to minimize the need for manual entry of additional elements, data standardization, and optimize our ability to interface data with other registries (28). Information-sharing and transparency must be balanced with patient privacy and data security concerns. In the coming year, a major SNEPT focus is to establish a shared database and finalize data-sharing agreements between centers.

Accelerating the Implementation of Knowledge Into Clinical Practice

Through information-sharing, PRO integration, and leverage of existing data, we aim to identify “best practices” in pediatric pretransplant, peri-transplant, and post-transplant care. We suspect that current variations in practice stem from dependence on center experience and lack of transparency, SNEPT is committed to transparently sharing data on practice and outcomes, and changing center practices based on available data, to overcome this. SNEPT will utilize both quality improvement and implementation science strategies to facilitate practice change. On the basis of our experience with the UNOS and SPLIT registries, we expect that common—and transparent—data reporting that is tailored to our priority projects will help us engage in evidence-based identification of potential best practices. In fact, the early priorities identified by patients and providers have identified the pillars around which focus and harmonization of protocols can begin.

Not only challenges—but also an opportunity for innovation to which SNEPT participants are committed—will be agreeing on practice changes to reduce variability and establishing trusted measurement tools for key outcomes. We will rely on our shared dedication to improving outcomes for all transplanted children, trusting partnerships built through iterative work together, and joint development of data and outcome collection tools to help overcome this. Practice changes could include identification of one strategy that all centers will adopt or a “menu” of potential strategies to choose from that lead to comparable outcomes. Both could be written into consensus treatment protocols, to be refined in quality improvement cycles, utilized for shared decision-making, and/or tested in comparative effectiveness research (Fig. 2). Consensus treatment plans or shared treatment priorities have been successfully developed for other pediatric chronic illnesses—for example, for treatment of juvenile idiopathic arthritis (29) or steroid-free remission and mucosal healing in inflammatory bowel disease (30). We could develop similar strategies for peri-operative anti-coagulation, immunosuppression or other areas, to reduce practice variability and provide opportunities for comparative effectiveness studies.

Advocacy Organization

In the United States, the scarcity of deceased donor livers inevitably affects pediatric access to life-saving treatment, children die waiting for liver transplants. For a decade, pediatric advocates have been calling on UNOS to address the preventable deaths of children. In the collaborative milieu of SPLIT and SNEPT, physicians and parents created a petition to support prioritizing children for pediatric donor livers and shared it on change.org. (https://www.change.org/p/an-open-letter-to-the-general-public-regarding-pediatric-liver-transplantation) This petition garnered more than 15,000 signatures. The power of a unified voice to represent the interests of children awaiting and after transplant cannot be understated. Having an LHS-like SNEPT strengthens this voice, and our ability to facilitate collective action.


SNEPT's ongoing challenge is to help achieve an “ideal outcome” for as many pediatric liver transplant recipients as possible. Our goal is for all children to “survive and thrive” into adulthood—medically, psychologically, and functionally (21). Less than one-third of pediatric liver transplant recipients currently meet criteria for an “ideal” outcome that we can measure with existing data—normal liver function tests, immunosuppression monotherapy, freedom from malignancy, and normal renal function (19,20,21). SNEPT strives to integrate providers’ current “ideal outcome” with the voices of patients, families, and other stakeholders to reach an “ideal outcome” that truly reflects shared priorities.


Although pediatric liver transplantation has improved dramatically over the past 40 years, opportunities to improve outcomes for all children remain. Leveraging the structure and processes of an LHN, SNEPT aims to establish evidence-based best practices, implement care improvements, personalize care, and ideally improve outcomes for all children awaiting or living with a liver transplant. In its first 2 years, SNEPT has built a network that integrates family and stakeholder input, practices transparency and information-sharing, and collaborates in multicenter efforts. SNEPT's next aims include harnessing data and technology tools to support continuous learning cycles, establishing a shared database, and launching patient-informed web-based resources for post-transplant education. Our hope is that we can show engagement, innovation, impact, and outcome improvement that will interest a broader group of pediatric transplant centers in joining SNEPT in the coming years. We feel that the LHS, patient-informed and engaged approach that we have taken in SNEPT has the potential to improve health and outcomes for all pediatric transplant candidates and recipients, at all transplant centers.


The Starzl Network gratefully acknowledges the Citrone Family and Citrone 33 for the transformative gift that established this network and the passion of Joy Starzl who carries on the vision of Dr. Thomas Starzl to “save the children.”


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anticoagulation; immunosuppression; patient-centered outcomes; pediatric liver transplantation; quality improvement; quality of life; transition of care

Copyright © 2020 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition