ESOT is dedicated to the pursuit of clinical and research excellence and improving patient outcomes and one of our core missions is to promote the sharing of scientific information and the building of evidence-based international practice, policies and medical guidelines.
To this aim, ESOT, with the support of the European Commission, has decided to strengthen its engagement in the collection of data on organ transplantation, and is launching a multi-organ, pan-European registry on transplant recipients and living donors.
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 and ESOT will build on this effort to provide a high quality service to the transplant community. In particular, ESOT will follow up on the achievements of the EDITH 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, who have successfully coordinated the European Liver Transplant Registry (ELTR) and worked on the development of a pancreas and islets transplant registry (EPITR).
The ESOT multi-organ registry 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 and feature a module for collecting information directly from patients (patient reported outcomes).
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.
Sharing best practice and improving patient outcomes and quality of life are the ultimate goals of the ESOT multi-organ registry. 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 registry 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.
For more information on the opportunities that are available, please contact:
Chief Executive Officer
+39 393 164 58 05