ESOT The European Society
for Organ Transplantation

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Leading the way in transplantation

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ESOT is committed to advancing clinical and research excellence and improving patient outcomes. Its core mission is to promote sharing of scientific information and building of evidence-based international practice, policies and medical guidelines.

As part of this mission, ESOT has developed a pan-European registries platform to support the systematic collection and analysis of transplant-related data. The platform enables transplant centres, national authorities, researchers, and partner organisations to contribute harmonised data on transplantation outcomes, living donation, and long-term patient follow-up.

The European Commission supports the development of the ESOT registry platform and contributes to its preparation.

 

A solid basis to build on

Strong international effort has resulted in the creation of single-organ registries and the establishment of international networks supported by national authorities, the EU Commission, patient organisations and the medical community. The ESOT Registries Platform builds upon decades of expertise in transplantation data collection. It leverages the experience of ESOT sections such as ELITA (European Liver and Intestine Transplant Association), which had been successfully coordinating the European Liver Transplant Registry (ELTR) since 1985 and EPITA (European Pancreas and Islet Transplant Association), which has officially launched the European Pancreas and Islet Transplant Registry (EPITR), as well as previous European initiatives focused on registry harmonisation and cross-border data exchange, such as the achievements of the EDITH[1] project, which concluded in December 2020.

This foundation enables ESOT to support both established registries and the development of new ones within a unified technical and governance framework.

[1] The Effect of Differing Kidney Disease Treatment Modalities and Organ Donation and Transplantation Practices on Health Expenditure and Patient Outcomes (EDITH).

A comprehensive concept

The ESOT Registries Platform has been designed as a modular and scalable infrastructure capable of hosting multiple organ-specific registries. It serves as a central framework through which national, regional, and local stakeholders can securely contribute data and benefit from shared insights.

The platform supports data collection on transplant recipients and donors, allowing a more comprehensive understanding of transplantation success and long-term quality of life.

A collaborative effort

Collaboration remains central to the ESOT registries initiative. ESOT works closely with transplant centres, scientific experts, competent authorities, industry partners, and patient representatives to ensure the platform remains scientifically robust and relevant to stakeholder needs. ESOT also encourages collaboration beyond Europe to support global research initiatives and knowledge exchange.

A service for the community

The ESOT Registries Platform is designed as a practical resource for the transplantation community. Participating centres and organisations can benchmark their own data against aggregated European data, helping identify trends, improve performance, and support evidence-based decision-making.

By facilitating data analysis, reporting, and scientific collaboration, such as annual reports, the platform contributes to a better understanding of transplant outcomes and supports continuous improvement in patient care.

Technical infrastructure

The ESOT Registries Platform is developed in partnership with Dendrite Clinical Systems, a specialist provider of clinical registry infrastructure. The platform is built to ensure secure data collection, advanced reporting capabilities, and compliance with regulatory and data protection requirements.

Data privacy and compliance
Protecting data privacy and confidentiality is a core principle of the ESOT Registries Platform. In compliance with GDPR and applicable data protection regulations, ESOT implements strict governance and security measures to safeguard sensitive information. ESOT’s Privacy Officer (PO) and Data Protection Officer (DPO) ensure the platform stays secure and compliant and that responsible data processing is aligned with regulatory best practices.