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Workshop 6 - "BURQOL-RD"

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EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe

Workshop 6 - Brainstorming & Policy Development "BURQOL-RD" Renata Linertová

Santé & Médecine
1  sur  22
Social Economic Burden and Health-related Quality of Life in Patients with Rare Diseases in Europe (BURQOL-RD) A/101205 Amsterdam, May 14, 2011 www.burqol-rd.com
Background (2010 – 2013) “ Council Recommendation on a European action in the field of rare diseases” 2009/C 151/02 EUROPLAN (2008 – 2011) To develop recommendations to elaborate national plans for RD, to facilitate the coherence of national initiatives with best practices. Need of tools to measure the impact of the national policies based on the recommendations of EUROPLAN BURQOL-RD www.burqol-rd.com
Main Aim: Model ,[object Object],[object Object],[object Object],www.burqol-rd.com
BURQOL-RD Project ,[object Object],[object Object],[object Object],[object Object],www.burqol-rd.com
Associated Partners ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Associated Partners are responsible for carrying out all the core activities of the project. www.burqol-rd.com
Collaborating Partners ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Collaborating Partners contribute to specific activities in the project and provide advice and assistance to ensure that all the objectives proposed are successfully reached. www.burqol-rd.com
Collaborators ,[object Object],[object Object],[object Object],www.burqol-rd.com
Specific objectives ,[object Object],[object Object],[object Object],[object Object],The collaboration of National Patient Associations and Federations for the specific RD is fundamental to ensure that all the objectives proposed are successfully reached. www.burqol-rd.com
Development www.burqol-rd.com Selection of 10 RD to be targeted: Delphi panel Patients and caregivers oriented survey Model of socio-economic burden
Disease Selection: Delphi panel ,[object Object],[object Object],[object Object],[object Object],[object Object],Criteria selection BOSCARE criteria List of rare diseases Prioritization Set list of RD www.burqol-rd.com Is it representative?
Criteria for the RD selection ,[object Object],[object Object],[object Object],[object Object],[object Object],Prioritized list of 52 RD BOSCARE criteria www.burqol-rd.com
Carroll Diagram ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],www.burqol-rd.com
Target RD ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],www.burqol-rd.com
Survey: Patients ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],www.burqol-rd.com
Survey: Caregivers ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],www.burqol-rd.com
On-line questionnaire www.burqol-rd.com
On-line survey in Spain ,[object Object],[object Object],[object Object],[object Object],www.burqol-rd.com
On-line survey in Europe ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],The collaboration of national patients’ association and federations is fundamental to ensure that all the objectives are successfully reached. www.burqol-rd.com
Expected outcomes ,[object Object],[object Object],[object Object],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. www.burqol-rd.com
Main benefits ,[object Object],[object Object],MORE VISIBILITY VALIDATED TOOLS www.burqol-rd.com
www.burqol-rd.com www.burqol-rd.com
[object Object],[object Object],[object Object],www.burqol-rd.com

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Workshop 6 - "BURQOL-RD"

  • 1. Social Economic Burden and Health-related Quality of Life in Patients with Rare Diseases in Europe (BURQOL-RD) A/101205 Amsterdam, May 14, 2011 www.burqol-rd.com
  • 2. Background (2010 – 2013) “ Council Recommendation on a European action in the field of rare diseases” 2009/C 151/02 EUROPLAN (2008 – 2011) To develop recommendations to elaborate national plans for RD, to facilitate the coherence of national initiatives with best practices. Need of tools to measure the impact of the national policies based on the recommendations of EUROPLAN BURQOL-RD www.burqol-rd.com
  • 3.
  • 4.
  • 5.
  • 6.
  • 7.
  • 8.
  • 9. Development www.burqol-rd.com Selection of 10 RD to be targeted: Delphi panel Patients and caregivers oriented survey Model of socio-economic burden
  • 10.
  • 11.
  • 12.
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  • 14.
  • 15.
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Notes de l'éditeur

  1. The “Council Recommendation on a European action in the field of rare diseases” allows common policy guidelines to be shared everywhere in Europe. The supporting tools prepared by EUROPLAN to promote and develop National Plans or Strategies for RDs and the spreading of relevant cases in the field of rare diseases within EU MSs will link national efforts with a common strategy at European level. This “double-level” approach ensures that progress is globally coherent and follows common orientations throughout Europe.
  2. Euro-Histio-Net - An international reference network for Langerhans cell histiocytosis and associated syndromes
  3. We are now at the beginning of the survey.