European Registry for Organs, Cells and Tissues

Acronym of the case:

EUROCET

Web address of the case:

http://www.eurocet.org

Country of the case:

Italy , Pan european

Posting Date:

12 December 2007

Last Edited Date:

18 March 2008

Author:

Paola Di Ciaccio (Centro Nazionale Trapianti)

Registry | transplant | Donation

Type of initiative

Project or service

Case Abstract

EUROCET (European Registry for Organs, Tissues and Cells) is a project funded under the e-TEN programme of the European Commission, DG INFSO. The project started on September 1st 2005 for 18 months duration, with a Consortium made by 20 partners coming from the following EU Member States: Italy, France, Spain, UK, Belgium, Netherlands, Germany, Slovenia, Hungary, Poland, Czech Republic, Slovakia and Estonia. EUROCET was a project aiming at setting up a registry on organ, tissue and cell donation and transplantation activity shared by old and new Member States. Starting from the EURODONOR project outcomes, i.e. a registry on organs donation and transplantation activity in old EU member states, the goal of the project was to create a database for old and new Member States, keeping in mind that data should be seen as a representation of different national realities. The creation of a registry for data collection on organ, tissue and cell donation and transplantation activities brought to several outstanding results, such as: 1) Delivering updated and official information to all European citizens, patients, professional operators and institutions, accessible via internet on real-time, with interactive and user friendly tools; 2) Harmonization of the terminology used for organs, tissues and cells and defined a set of data to collect and to insert in the registry, and 3) Contribution to the effective implementation of the European Directive EC 2004/23 "Setting standards of quality and safety for the donation, procurement, testing, processing, preservation, storage and distribution of human tissues and cells". The project implemented a first registry of authorized or licensed Tissue Establishments of the EU MSs participating to the project. This was to respond to the requirements set out in article 10 of the Directive 2004/23/CE.

Description of the case

Domain

eHealth

Topic

Other | Regional/national Health Information Networks | Health portals

Sector

Healthcare

Date

September 2005 to February 2007

Date operational

February 2007

Target Users

Target Users Description

Institutional Bodies (Ministries of Health, European Commission, International organizations, Standardisation Organisations, Organ Exchange Organizations etc.) through the project results; stakeholders such as European Transplant Organisations, Transplant Centres, Medical Associations and Societies, European and National Healthcare Institutions, Medical professionals, Hospitals, patients, Donation Interest Groups and Associations; general public (to increase awareness and sensibility towards the value of donation at the social and human level).

Scope

International

Status

Operation

Language(s)

Policy Context and Legal Framework

In the last few years the EU community welcomed several projects dealing with donations and transplantations activities. Among the projects funded by the European Commission, the EURODONOR project, lasting from January 2003 to June 2004, had the aim, after having harmonized the terminology related to the transplant process, to foster data and experience exchange through a portal with official and updated data. This project, with its database was a good starting point for his follower, also because there is already a strong network of countries willing to share their data and experience and the repository of all the data is still working.

Nevertheless, EURODONOR did not include East European Acceding Countries among the partners and it was merely organs oriented. With the entrance of the ten new Member States, it is more and more necessary to create some common and agreed standards in the donation of organ, cells and tissues, from the definition to data and experience exchange, and to manage to involve these countries in the whole process.

The approval of the new European Directive on Tissues and Cells (OJ L102/48, 7.4.2004) and the entrance of new Member States in the European Union have opened a new horizon and highlighted growing needs for this field. Present situation is highly heterogeneous in this field and this strongly hinders the application of the new Directive that stresses the need for common rules ensuring comparable levels of quality and safety. In this situation EUROCET supply a precious tool for taking a reliable picture of present system in different Member States and set the grounds for application of European Directive.

Project Size and Implementation

Type of initiative

Content provision

Overall Implementation approach

Public administration

Technology choice

Proprietary technology | Accessibility-compliant (minimum WAI AA) | Open source software

Funding source

Public funding national

Project size

Implementation: Not applicable/not available

Implementation and Management Approach

At the end of the project both the EC and the Eurocet partners showed interest in continuing the maintenance of the Eurocet registry and, most of all, the need to enlarge it to all EU MSs. The EC supported the project leader, the Italian National Transplant Centre, to get in contact with all Competent Authorities for tissues and cells in order to gather information on national figures and on licenced Tissue Establishments in their Countries. The DG SANCO of the EC also showed much interest in this project and shared a common approach with the DG INFSO that originally funded the project. DG SANCO decided to put a link of the Eurocet website within their web pages and it encouraged CAs at a number of meetings to feed the Eurocet registry.

The registry is now aiming at: setting up a register of licenced Tissue Establishments throughout Europe (responding to the Directive 2004/23/EC requirements), and gathering activity data for tissue and cell donation and transplantation of the 27 MSs on an yearly basis.

Technology solution

The EUROCET consists of a vertical portal which enables data suppliers and end users to connect via internet, using HTTP and a standard web browser, to common resources for obtaining services and information. The common resources consist in database servers and application servers.The content manager of the portal directly allows the delivery of information to the professional users and citizens.

EUROCET users can access the portal as guests, without having to supply their identification data, or register themselves in order to receive a customised service based on their profile (i.e. transplant centre operator, tissue bank operator, physician, patient, â€¦).
The available reports, regarding the donation and transplant activity for organs, cells and tissues performed in each participating Country, as well as the waiting lists, are produced using the data stored in the database.

The EUROCET relational database can hold raw aggregated data as well as predefined indicators regarding donation and transplant of organs, tissues and cells. The knowledge base is made available through Business Intelligence reports.

The design of the data tables is optimized for the usage of Business intelligence tools that will provide the aggregation, comparison and analysis of data.

Impact, innovation and results

Track record of sharing

The project results have been disseminated at several important international congresses where most stakeholders attended, such as EBMT (european Bone Marrow transplantation), EATB (european association of tissue banks), ETCO (european transplant coordinator organization) and ESOT (european society for organ transplantation). A final workshop was organized at EU Parliament premises on February 8, 2007.

Lessons learnt

Lesson 1 - Importance of harmonized and comparable data.

Lesson 2 - Importance of common glossaries.

Lesson 3 - Importance of disseminating reliable information.

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