History

ESOT started building a platform to host pan-European registries in January 2021, leveraging on the experience of its section ELITA which has been successfully coordinating the European Liver Transplant Registry since 1985. The platform was thought of as modular, scalable and able to receive information on different organ transplants: a one-stop solution for European national and local authorities to contribute data and share the practice with the community.

• January 2021: Launch of the project
• February 2021: The EPITR scientific committee start work on the development of a pancreas and islets transplant registry
• December 2021: Dendrite Clinical Systems is selected as the technical partner to design, develop and implement the platform
• April 2022: the ESOT Council approves the Governance of the registries project
• April 2022: 1st General Assembly

Governance

The ESOT registry platform will serve a variety of stakeholders, including competent national authorities, national/regional/local transplant registries, national and international scientific review committees, transplant centres and individual professionals, patients and donors (families), and the general public. To take into consideration all voices of the transplant community, the ESOT Council has put much effort into establishing an inclusive governance of the registry project.

• The General Assembly represents data contributors and acts as an advisory body. It ensures that the registries can comply with the existing legal, scientific and ethical regulations, and it advises the Steering Committee on developing the strategy and establishing new registries.
• The Steering Committee is responsible for developing the strategy of the ESOT registries platform and submitting it to the General Assembly. It promotes the registries platform and invites new registries contributing members to the General Assembly. It supervises the budget and finances and reports to the General Assembly.
• The Scientific Committees are composed of renowned professionals in the field of transplantation. They are responsible for defining the set of variables to collect and the expected outcomes of the registry. A scientific committee is created as soon as the Steering Committee approves the proposal for a new registry.

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Funding

ESOT raises funds according to the strategy agreed upon by the Steering Committee and to maintain the technical infrastructure, providing technical support for users of the registries and widening contacts with participating or interested parties, with scientific consortia, the industry and patient associations. In agreement with its bylaws (Art. 7), ESOT calls for donations, sponsorship contributions, inheritances and legacies to support the registries platform project.

Please contact us if you want to support this pan-European endeavour.

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 the practice with the whole of the community. The registry will gather information on transplant recipients and living donors when applicable. In addition, it will feature a module for collecting data directly from patients (patient-reported outcomes).

A collaborative effort
It is the wish of ESOT to pursue and strengthen 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 the 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 practices 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 publish aggregated data anonymously, openly and transparently, providing the community with conclusions and aggregated raw data. The hosted registries will allow individual contributors to compare their data with the aggregated data, accessible at any time via personalised tableaus, thus directly serving 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).