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Platform of information services for the coordination of rare disease research with various stakeholders from research, SMEs and patient organisations and the coordination of early clinical trials

Platform of information services for the coordination of rare disease research with various stakeholders from research, SMEs and patient organisations and the coordination of early clinical trials

Objective

In the field of rare diseases, it is impossible to reach a critical mass of resources at national level. To achieve a European critical mass of experts and operational partners, all the proposed actions are based on the coordination and development of already existing and active networks and organisations across Europe: Orphanet, Eurordis, EPPOSI, EuropaBio, EBE. The project aims at developing information tools to address in a comprehensive and integrated approach the set of factors that currently affects research on rare diseases and its coordination. The specific objectives are: (1) to develop an information service, freely accessible on Internet, dedicated to research activities in the field of rare diseases and orphan medicinal products, including a database of research projects, funded at MS level and at the EU level, and a database of collections and research networks. (2) to develop services aiming at speeding up the enrolment of patients in clinical research. (3) to develop a database of research projects with development potential, to help scientists and Industry establish the necessary partnerships. (4) to organise a workshop with all stakeholders to discuss known bottlenecks and find solutions. This project is based on input from the following (1) an EU funded information service on rare diseases: Orphanet (www.orpha.net) (2) a European platform of Patients organization, Science and Industry (EPPOSI) which actively supports partnering activities. (3) an umbrella organization of patient support groups (Eurordis) involved in supporting research and regulatory activities. The project aims at establishing the platform of services in 11 European countries in the pilot phase in order to propose an extension to the 25 European countries in 2 years time. Ultimately, the goal is to convert scientific developments into diagnostic tools and therapies as quickly as possible...

Coordinator

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

Address

101 Rue De Tolbiac
Paris

France

Administrative Contact

Ségolène AYMÉ (Dr)

Participants (17)

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UNIVERSITY COLLEGE CORK, NATIONAL UNIVERSITY OF IRELAND, CORK

Ireland

IRCCS - OSPEDALE CASA SOLLIEVO DELLA SOFFERENZA

Italy

UNIVERSITAT POMPEU FABRA

Spain

THE VICTORIA UNIVERSITY OF MANCHESTER

United Kingdom

KATHOLIEKE UNIVERSITEIT LEUVEN

Belgium

EUROPEAN ORGANIZATION FOR RARE DISEASES

France

ACADEMISCH ZIEKENHUIS BIJ DE UNIVERSITEIT VAN AMSTERDAM

Netherlands

UNIVERSITY OF TURKU

Finland

LES ENTREPRISES DU MEDICAMENT

France

VERENIGING SAMENWERKENDE OUDER- EN PATIENTENORGANISATIES

Netherlands

EUROPEAN PLATFORM FOR PATIENTS'ORGANISATIONS, SCIENCE AND INDUSTRY

Belgium

EUROPEAN FEDERATION OF PHARMACEUTICAL INDUSTRIES ASSOCIATIONS

Belgium

INSTITUTO DE GENETICA MEDICA JACINTO MAGALHAES

Portugal

MEDIZINISCHE HOCHSCHULE HANNOVER

Germany

EUROPABIO

Belgium

MEDIZINISCHE UNIVERSITAET WIEN

Austria

VERENIGING VOOR CHRISTELIJK HOGER ONDERWIJS WETENSCHAPPELIJK ONDERZOEK EN PATIENTENZORG

Netherlands

Project information

Grant agreement ID: 503246

  • Start date

    1 April 2004

  • End date

    30 June 2006

Funded under:

FP6-LIFESCIHEALTH

  • Overall budget:

    € 474 992

  • EU contribution

    € 400 000

Coordinated by:

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France