The ESOT registries platform

ESOT is dedicated to the pursuit of 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.

To this aim, ESOT has decided to strengthen its engagement in the collection of data on organ transplantation, and is launching a platform to host pan-European registries on transplant recipients and living donors. 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 establishment of international networks supported by national authorities, the EU commission, patient organizations and the medical community. ESOT will build on this effort to provide high quality service to the transplant community. In particular, ESOT will follow up on the achievements of the EDITH[1] project, which concluded in December 2020 and has laid the foundations for the establishment of a living donor registry and a kidney recipient registry. In addition, ESOT will also bring together the work of its sections ELITA and EPITA, which have successfully coordinated the European Liver Transplant Registry (ELTR) and worked on the development of a pancreas and islets transplant registry (EPITR).

A comprehensive concept

The ESOT registry platform will be built as a modular, scalable platform able to receive information on different organ transplants: it will be a one-stop solution for European national and local authorities to contribute data and share practice with the whole of the community. The registry will gather information on both transplant recipients and living donors, when applicable. In addition, it will feature a module for collecting information directly from patients (patient reported outcomes).

A collaborative effort

It is the wish of ESOT to pursue and strengthen the collaboration with existing and future partners, including national and local authorities, transplant centres, patient organisations, and academia. The Governance of the registry will be open and transparent, and ensure representation of all stakeholders. In addition to Europe, ESOT will seek collaboration with non-European transplant registries and authorities, and promote global studies on organ transplantation. ESOT will fund the project via a diverse financial portfolio with no influence of any funding bodies in the governance and all the scientific elements of the registries.

A service for the community

Sharing best practice and improving patient outcomes and quality of life are the ultimate goals of the ESOT registry platform. This will be achieved by providing the transplant community with a solid set of data to analyse from different points of view. ESOT will issue annual reports on the collected data, and will publish aggregated data anonymously, openly and transparently, providing the community with conclusions and anonymised, aggregated raw data. The hosted registries will allow individual contributors to compare their own data with the aggregated data, accessible at any time via personalised tableaus, thus serving directly national and local communities.

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

Our technical partner

ESOT has signed an agreement with Dendrite Clinical Systems Ltd  after a rigorous, competitive tender process. Under the agreement, Dendrite will work closely with ESOT to design, develop and implement a modular platform to integrate user-friendly registries that will facilitate clinical and patient reported outcome data collection, analysis, reporting and research covering all transplant domains.