Workshop 6 - "BURQOL-RD"

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The BURQOL-RD project aims to develop a model to quantify the socio-economic burden and health-related quality of life of rare disease patients and caregivers in Europe. The 3-year project will measure these impacts for 10 rare diseases across 8 countries. Associated partners will carry out core activities while collaborating partners provide specific contributions. The project will generate standardized tools, conduct a pilot study, and refine the tools for ongoing rare disease assessment and monitoring across Europe.

Health & Medicine

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 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

[object Object],[object Object],[object Object],www.burqol-rd.com

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This document discusses a membership meeting of EURORDIS about patient experiences in developing and implementing national plans. It summarizes the mission and objectives of Raríssimas, an organization founded in 2002 to help those affected by rare diseases. Key goals included creating a help line, multidisciplinary treatment centers, and Casa dos Marcos, a respite center. It describes Raríssimas' role in advocating for and helping develop Portugal's National Plan for Rare Diseases to take an integrated approach and build partnerships to address rare diseases.

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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

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

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Editor's Notes

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.
Euro-Histio-Net - An international reference network for Langerhans cell histiocytosis and associated syndromes
We are now at the beginning of the survey.

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