The building of an institutional liver transplant registry: opportunities and challenges

Abstract

To improve current data systems for institutional decision-making, the Adult Liver Transplant Registry was established at the Hospital Italiano de Buenos Aires, Argentina. This article describes its design and implementation and reports on the outcomes for patients transplanted since its January 2020 launch. A multidisciplinary team designed the registry by identifying key variables from a literature review while considering balance between data depth and feasibility. Rigorous quality control measures were enforced, including monthly audits and staff training. Benchmark indicators for post-transplant outcomes were established. As of November 2023, the registry included 136 transplants. Its implementation and maintenance were straightforward, with no significant difficulties encountered. Cirrhosis was the predominant indication (77%) for transplant. Only one living donor transplantation was performed. Post-transplant results generally aligned with benchmarks, but rates of biliary complications slightly exceeded the recommended thresholds. The one-year post-transplant survival rate was 87%. The successful registry implementation provides a robust framework for research, treatment management, and patient care enhancement within a liver transplant unit.

Keywords: Benchmark Indicators; Liver transplantation; Patient Care Improvement; Patient registry; Quality Control Measure; Registry Design; Transplant Outcomes.

Figure 1.

Description of the registry’s structured visits representing every part of the patient trajectory, from pre-transplant evaluation to post-transplant follow-up.

Figure 2.

Data entry flowchart that shows the process for data collection, and assignment of tasks for different groups. CRF, clinical record form.

Figure 3.

Post-transplant results are shown in comparison with benchmarks.

Figure 4.

Overall post-transplant two-year survival (n = 130). Six patients had missing data on follow up. One-year post-transplant survival was 87% (95% CI, 79–92%).