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Institute for rare diseases » 2010, April 20 – BURQOL RD Project
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  • 2010, April 20 – BURQOL RD Project

    Print | Wednesday 15 December 2010 | 1,903 views

    Project Duration – 20.04.2010 – 20.04.2013 (36 months)
    12 Partners
    Fundación Canaria de Investigación y Salud (FUNCIS), Spain

    Instituto de Salud Carlos III (ISCIII), Spain

    Instituto Superiore di Sanita (ISS), Italy

    Federación Española de Enfermedades Raras (FEDER), Spain

    Bulgarian Association for Promotion of Education and Science (BAPES), Bulgaria

    London School of Economics and Political Science (LSE-Health), United Kingdom

    University Paris Val de Marne (UPVM), France

    Leibniz University Hannover (LUH), Germany

    The Swedish Institute for Health Economics (IHE), Sweden

    Universita Commerciale “Luigi Bocconi” (Bocconi), Italy

    Centre for Public Affairs Studies Foundation (CPASF), Hungary

    Mario Negri Institute for Pharmacological Research (IRFMN), Italy

    7 Collaborating Partners from EU
    Total Budget: 1 175 044 euros
    EAHC Co-Funding: 705 022 euros
    Project Coordinator: Prof. Julio López Bastida, Fundación Canaria de Investigación y Salud (FUNCIS), Spain
    Official Website – www.burqol-rd.com

    Project Objectives:
    – To generate a methodological framework to measure the socio-economic burden of RD

    – To define a methodological framework to measure the HRQOL of RD

    – To develop unified instruments to gather information on the socio-economic burden and HRQOL of RD throughout Europe

    – To perform a pilot study measuring the socio-economic burden and HRQOL for selected RD

    – To refine and package the tools developed for continued and more extensive costs and HRQOL studies of RD

    Project Outcomes:
    An integrated and harmonized set of instruments to assess and monitor socio-economic burden and HRQOL of patients affected by RD and their caregivers.
    1. A detailed analysis of the services (health and social care) received by people with specific RD in different EU countries, including the identification of formal and informal care.
    2. A report on the current socioeconomic and HRQOL status of RD patients and caregivers for the selected RD and EU countries.
    3. The results and deliverables that emerge from this project will stimulate the future comparability and monitoring of RD in Europe as well as anticipate future information needs.

    Because of their characteristics, rare diseases require the combined efforts of health and social care professionals, politicians, managers and researchers to increase the availability of effective disease management tools to improve care and to extend both life expectancy and Health Related Quality of Life (HRQOL). Given the nature and the goals of the BURQOL-RD project, it is clear that a fundamental beneficiary of the results of this project will be the families and caregivers of those affected by RD, a group that is often overlooked when considering such devastating diseases.

    Contacts for Further Information:
    Help Line: (+359-32) 57 57 97
    E-mail: iskrov@raredis.org
    Last modification: 12:50 09.06.2010

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