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

• Published in: Journal of international medical research Vol. 52; no. 7; p. 3000605241264232
• Main Authors: Marciano, Sebastián, Martínez Morales, Jorge Carlos, Juana, Camila, de Santibañes, Martin, Pekolj, Juan, de Santibañes, Eduardo, Francisconi, Mariela, Uño Tala, Jimmy Walker, Burgos Pratx, Leandro Daniel, Gadano, Adrian, Ardiles, Victoria
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.07.2024; Sage Publications Ltd; SAGE Publishing
• Subjects: Adult; Aged; Argentina - epidemiology; Female; Humans; Liver Transplantation - methods; Liver transplants; Male; Middle Aged; Registries; Survival Rate; Argentina; Quality Control Measure; Patient Care Improvement; Benchmark Indicators; Patient registry; Liver transplantation; Transplant Outcomes; Registry Design
• ISSN: 0300-0605; 1473-2300; 1473-2300
• DOI: 10.1177/03000605241264232

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.