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Genetic testing in Europe - network for test development harmonization, validation and standardization of services

Objective

Genetic services in Europe, while based on high quality scientific know-how, suffer from an intolerably high level of technical errors and poor reporting, caused by a lack of structuring and complementarity at the European level and the absence of a common European objective to provide quality services to all its consumers now and in the future. Diverse and heterogeneous quality schemes, lack of reference systems and differing Member State (MS) regulations, have added to the overall disorganization and fragmentation of services. Nevertheless, genetic services face an ever-increasing number of requests for testing, while widespread susceptibility testing and pharmacogenetic tests are lurking on the horizon. With the active participation of stakeholders, the proposed EUROGENTEST NoE intends to structure, harmonize and improve the overall quality of these services, while paying substantial attention to issues resulting from testing including legal, health policies and health economic impact, IPR (Intellectual Property Rights), ethical and social questions: confidentiality, informed consent, employment and insurance. The EUROGENTEST NoE will improve the organization and harmonization of external quality assessment/assurance schemes, facilitate the development of guidelines and support the accreditation/certification of the genetic services. In addition, collaboration between academic centers and the private sector on technology development and the validation of genetic tests, should generate more rapid translation and accurate, more economical and overall better testing technologies. A quality website, with all relevant information will be developed and made accessible to experts and customers. With the help of Parent and Patient Support Groups, the EUROGENTEST NoE will collect quality tools for education of different categories of takeholders.Training for personnel both from within and from outside the EU will be provided.

Leaflet | Map data © OpenStreetMap contributors, Credit: EC-GISCO, © EuroGeographics for the administrative boundaries

Coordinator

KATHOLIEKE UNIVERSITEIT LEUVEN

Address

Oude Markt 13
Leuven

Belgium

Administrative Contact

Jean-Jacques CASSIMAN (Professor)

Participants (34)

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ENTHOVEN ASSOCIATES DESIGN CONSULTANTS NV

Belgium

GENEVA UNIVERSITY HOSPITALS

Switzerland

THE UNIVERSITY OF MANCHESTER

United Kingdom

SEMMELWEIS UNIVERSITY

Hungary

INTERNATIONAL INSTITUTE OF MOLECULAR AND CELL BIOLOGY

Poland

CHARLES UNIVERSITY PRAGUE - 2. SCHOOL OF MEDICINE

Czechia

NATIONAL UNIVERSITY OF IRELAND DUBLIN

Ireland

EUROPEAN COMMISSION, JOINT RESEARCH CENTRE

Belgium

OXFORD RADCLIFFE HOSPITALS NHS TRUST

United Kingdom

UNIVERSITY CHILDREN'S HOSPITAL BASEL

Switzerland

IRCCS- ISTITUTO CASA SOLLIEVO DELLA SOFFERENZA

Italy

UNIVERSITY OF TURKU

Finland

LUNDS UNIVERSITET

Sweden

MEDIZINISCHE HOCHSCHULE HANNOVER

Germany

INSTITUTO DE BIOLOGIA MOLECULAR E CELULAR

Portugal

LEIDEN UNIVERSITY MEDICAL CENTER

Netherlands

THE UNIVERSITY OF WARWICK

United Kingdom

THE GENETIC INTEREST GROUP

United Kingdom

THE RARE CHROMOSOME DISORDER SUPPORT GROUP

United Kingdom

LNSTITUTE OF MOLECULAR GENETICS AND GENETIC ENGINEERING

M.R.C.-HOLLAND

Netherlands

WAYPOINT SYSTEMS LTD

United Kingdom

MANAGEMENT CONSULTING AND RESEARCH

Belgium

PHENOSYSTEMS SA

Belgium

CHEMAGEN BIOPOLYMER-TECHNOLOGIE AKTIENGESELLSCHAFT

Germany

FONDAZIONE-IRCCS-OSPEDALE MAGGIORE POLICLINICO, MANGIAGALLI E REGINA ELENA - MILANO

Italy

UNIVERSITY OF SOUTHAMPTON

United Kingdom

UNIVERSITAIR MEDISCH CENTRUM ST RADBOUD

Netherlands

BAYERISCHE JULIUS-MAXIMILIANS UNIVERSITÄT WÜRZBURG

Germany

HOSPITALES UNIVERSITARIOS VIRGEN DEL ROCÍO-SERVICIO ANDALUZ DE SALUD

Spain

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France

STAB VIDA, INVESTIGAÇÃO E SERVIÇOS EM CIÊNCIAS BIOLÓGICAS LDA

Portugal

UNIVERSIDAD CATÓLICA DE SANTIAGO DE GUAYAQUIL

Ecuador

WESTFÄLISCHE WILHELMS-UNIVERSTITÄT MÜNSTER

Germany

Project information

Grant agreement ID: 512148

  • Start date

    1 January 2005

  • End date

    30 June 2010

Funded under:

FP6-LIFESCIHEALTH

  • Overall budget:

    € 10 400 000

  • EU contribution

    € 10 000 000

Coordinated by:

KATHOLIEKE UNIVERSITEIT LEUVEN

Belgium