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

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 202...

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Published inJournal 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
LanguageEnglish
Published London, England SAGE Publications 01.07.2024
Sage Publications Ltd
SAGE Publishing
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Online AccessGet full text
ISSN0300-0605
1473-2300
1473-2300
DOI10.1177/03000605241264232

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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.
AbstractList 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.
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.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.
Author Martínez Morales, Jorge Carlos
de Santibañes, Eduardo
de Santibañes, Martin
Juana, Camila
Marciano, Sebastián
Ardiles, Victoria
Uño Tala, Jimmy Walker
Pekolj, Juan
Burgos Pratx, Leandro Daniel
Francisconi, Mariela
Gadano, Adrian
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Issue 7
Keywords Quality Control Measure
Patient Care Improvement
Benchmark Indicators
Patient registry
Liver transplantation
Transplant Outcomes
Registry Design
Language English
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SubjectTerms Adult
Aged
Argentina - epidemiology
Female
Humans
Liver Transplantation - methods
Liver transplants
Male
Middle Aged
Registries
Survival Rate
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Title The building of an institutional liver transplant registry: opportunities and challenges
URI https://journals.sagepub.com/doi/full/10.1177/03000605241264232
https://www.ncbi.nlm.nih.gov/pubmed/39079129
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Volume 52
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