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Core WPs (WP4-WP8)

    WP4 - Legal basis
    Assesses the ground, contents and most suitable EU legal instrument, to allow the EU registration of individual subjects’ health data. The WP will build upon the results of other European projects and will add the specific requirements of the care, management and surveillance of rare diseases.
    WP Leader: Angela Brand and David Townend - University of Maastricht (Netherlands)

    WP5 - Policy scenarios on scope, aims, governance and long-term sustainability
    Defines the scope and a governance model for registries, representing the interests of relevant stakeholders (national and sub national public health authorities, researchers, drug industry, patients’ associations and centres collecting data) in strategic decisions.
    WP Leader: Yann Le Cam - EURORDIS (France)

    WP6 - Common data set and disease-specific data collection
    Defines a common data set, which is independent of the registered rare disease, and of other disease-specific modules, in order to provide information consistent with the agreed scope of the registries and useful for public health actions and for other aims.
    WP Leader: Fabrizio Bianchi - National Council of Research Pisa (Italy)

    WP7 - Data quality, validation and data sources integration
    Aims at defining the criteria for quality assessment of data, data sources and procedures in the registries.
    WP Leader: Manuel Posada de la Paz - Istituto de Salud Carlos III (Spain)

    WP8 - Current needs of existing registries on rare diseases
    Will carry out a survey of the current registries to identify their conditions, expectations and needs and will define the services and contents which help in performing activities of interest of the platform users.
    WP Leader: Sabina Gainotti - National Centre for Rare Diseases, Istituto Superiore di Sanità (Italy)

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