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MS Barometer 2009

MS Barometer 2009. EMSP is…. is the umbrella organisation of the predominant national MS-Societies in currently 34 European countries and represents more than half a million people with and more then 1,5 million people daily affected by MS (such as family and other care givers) .

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MS Barometer 2009

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  1. MS Barometer 2009

  2. EMSP is… is the umbrella organisation of the predominant national MS-Societies in currently 34 European countries and represents more than half a million people with and more then 1,5 million people daily affected by MS (such as family and other care givers) Contrary to other disease areas, people with Multiple Sclerosis in Europe are represented by only one European MS umbrella organisation.

  3. Structure of the MS Barometer • 7 Areas: • Section 1: Access to treatment & therapies (19 questions) • Section 2: Research (3 questions) • Section 3: Employment (8 questions) • Section 4: Empowerment (7 questions) • Section 5: Reimbursement of Costs (6 questions) • Section 6: Data Collection (5 questions) • Medication coming to the market (3 questions) • Structure of the Barometer inspired by European Code of Good Practice (1st four categories) • Extensive transnational consultation with the medical and patient communities to review content in 2009

  4. Barometer 2009 at glance • 29 countries represented versus 32 countries in 2008Reasons: time consuming – some organisations would like to participate once every two years, difficulties to gather information, etc. • Maximum scoring of 225 points • Comparison between results 2008/2009 has to be cautious (questions have been reformulated, participating countries are not the same, etc.)

  5. Overall Barometer 2009 results

  6. Access to treatment and therapies

  7. % PwMS receiving DMDs

  8. %PwMS receivingsymptomatictreatment

  9. % of PwMS receiving in-patient rehab.

  10. % PwMSreceiving out-patient rehab.

  11. Palliative Care programme available?

  12. Research Agenda on MS(total score in the section per country)

  13. Employment(Total score per country in the section)

  14. Pension fund as income for PwMS

  15. Empowerment of PwMS

  16. MS Society having consultative statuswith the national administration

  17. Reimbursement of costs

  18. Data collection Only 13 countriesstate having MS registers (national or regional): Austria, Bosnia-Herzegovina, Croatia, Denmark, France, Greece, Germany, Latvia, Malta, Norway, Russia, Sloveniaand Sweden.

  19. Medication on the market

  20. Thank you! emsp@emsp.org

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