Project Coordination – WP1 Leader: DSO

The project coordination will be carried out within Work Package (WP) 1, which is led by Deutsche Stiftung Organtransplantation (DSO). As Coordinator of the project, DSO aims to facilitate an effective implementation of the project. Within the scope of its duties, DSO wants to

  • monitor the actions of all Work Packages and their alignment to the overall objectives of the project
  • provide support to all partners in carrying out their project-related tasks
  • ensure an efficient administrative and financial management of the project, including the provision of reports and other required documentation
  • accompany decision-making processes on issues that might affect the achievement of the project’s overall objectives and provide assistance in the implementation of sound, long-term solutions
  • provide an effective management of common activities of the EDITH consortium
  • maintain the communication of the EDITH consortium with the European Commission representatives and the Project Officer

Dissemination – WP2 Leader: OVSz

The role of Work Package 2 is to ensure that the project, its outcomes and deliverables is made known to all relevant target groups and stakeholders. The specific objectives of WP 2 are:

  • to develop a unique visual appearance of the project,
  • to identify all relevant target groups and to develop a concise dissemination plan,
  • to inform all target groups about the project, its overall objectives, goals and development,
  • to promote the outcomes and results of the project.

Evaluation – WP3 Leader: MOH RC

In order to ensure that the objectives and tasks of the project are achieved during the project’s life, project activities will be continuously monitored and evaluated.

The purpose is to determinate the relevance and fulfilment of project objectives, developmental efficiency, effectiveness, impact and sustainability.

The topics to be evaluated: the partnership, project process, project outcomes, project products and finally the overall project impacts.

The evaluation will follow a two-fold approach:

  • one focused on the project process and
  • the other on the evaluation of the outcomes

The progress of the project will be monitored by process indicators, while project outputs and outcomes will be measured by performance and effectiveness indicators closely related to the achievement of objectives.

The work package on evaluation will be led by the Ministry of Health of the Republic of Croatia/The Institute for Transplantations and Biomedicine and shall comprise all participating partners.

The evaluation will be complemented with the expertise from an External Advisory Board comprising internationally renowned multidisciplinary team of experts.

Treatment modality choices, outcomes and costs for end-stage kidney disease WP4 Co-Leaders: AMC on behalf of ERA-EDTA and  CNT-ISS

There is important variation in practice in the overall management of end stage kidney disease (ESKD) and access to dialysis and renal transplantation in Europe. Within Work Package 4 (WP4) of the EDITH project, the ERA-EDTA Registry in the Academic Medical Center (AMC) in Amsterdam and the Italian National Transplant Center (CNT–ISS) will – together with collaborating stakeholders like renal registries, the European Renal Association-European Dialysis and Transplant Association, the European Kidney Patients Federation, and the French Agence de la biomédecine – address the epidemiology and costs of different treatment modalities for ESKD. This includes the assessment of 1) the frequency of the various treatment modalities for ESKD; 2) factors that influence the choice of those treatment modalities by patients and doctors; and 3) the impact of treatment modality choice on health outcomes like patient survival and quality of life, but also on health care budgets.

Living Donor Registry – WP5 Co-Leaders: NTS and IDIBAPS

EDITH WP5 is aimed at the realization of a European Living Donor Registry (ELDR) for living kidney donors, supporting lifelong follow-up data collection. An important rationale for this development is that EU Member States are both legally (EU Directive 2010/53/EU) and morally obliged to follow-up living donors in order to protect their safety. This work package will build upon the recommendations of the former EU Joint Action “Achieving Comprehensive Coordination in Organ Donation” (ACCORD) will be realized in close cooperation with WP6. The intended result of this work package is a supranational ELDR, comprising of a database, a web-based application supporting both direct data entry and file upload, a data download facility, and a report facility complying with all legal requirements. EDITH WP5 will also support EU member states building, or adapting, their national living donor registries by giving functional and technical advice. Finally, to govern the ELDR, a governance structure will be developed, data request procedures for ELDR requests shall be implemented, and recommendations for future sustainability of the ELDR will be made.

Transplant Recipient Registry – WP6 Co-Leaders: ET and NHSBT

WP6 will facilitate a consistent and comprehensive collection of data in EU Member States via national kidney follow-up registries and ultimately enable a European Kidney Transplant Registry. The main objective of this work package is therefore to support the establishment of a follow-up registry (FUR) of kidney transplant recipients in all EU Member States.

During the first year all existing national registries will be identified, and a basic data set (based on the data set developed in the previous EU project „European Framework for Evaluation of Organt Transplants” (EFRETOS)) will be defined. Subsequently during the second and third year of the EDITH project the FUR will be developed, tested and made available to EU Member States. The development of a Quality of Life tool will be finalized and made available in the third year.

The combination of clinical data and Information on the quality of life of transplant recipients will enable the evaluation of the benefits of transplantation in a more broad way thereby supporting the continuous enhancement of European transplant practice.