MS BAROMETER 2011 P U B L I C A T I O N : A P R I L

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Stanley Clark
5 years ago
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1 MS BAROMETER 211 P U B L I C A T I O N : A P R I L 2 1 2

2 ABOUT EMSP The European Multiple Sclerosis Platform (EMSP) 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, million people daily affected by MS (such as family and other care givers). Contrary to other disease areas, Persons with Multiple Sclerosis (PwMS) in Europe are represented by only one European MS umbrella organisation.

The main goal of this benchmarking tool is to obtain an accurate picture of the

3 MS BAROMETER The first MS Barometer was launched in 2 in the framework of the MS-ID project, co-financed by the European Commission under the Public Health Programme. The main goal of this benchmarking tool is to obtain an accurate picture of the situation of PwMS across Europe through answers to key questions about obstacles and barriers faced by PwMS.

4 STRUCTURE OF THE MS BAROMETER 7 Areas: 1. Access to treatment & therapies ( questions 7 points) 2. Research (3 questions 1 points) 3. Employment & Job retention( questions 3 points) 4. Empowerment (7 questions 3 points). Reimbursement of Costs (6 questions 3 points) 6. Data Collection ( questions 2 points) 7. Medication coming to the market (3 questions 1 points) Structure of the Barometer inspired by European Code of Good Practice Extensive transnational consultation with the medical and patient communities to review content in 29

5 BAROMETER 211 AT A GLANCE Launched in Summer 211 (closed end of August 211): 33 countries represented versus 29 countries in 29 Maximum scoring of 22 points Novelty! Online questionnaire

6 MS Barometer 211 Overall results - Max. score: 22 points - 33 countries Italy Belgium Netherlands Finland Switzerland Ireland Luxembourg Czech R Slovakia Portugal Malta Croatia Spain Hungary Romania Estonia Lithuania Serbia Poland Bulgaria Belarus

7 Comparison overall results 29 (series1) / 211 (series2) Series1 Series

8 Access to treatments and therapies Italy Netherlands Belgium Finland Switzerland Luxembourg Portugal Spain Czech Republic Slovakia Lithuania Estonia Malta Ireland Croatia Hungary Romania Serbia Bulgaria Poland Belarus Striking differences between 29/211 Lithuania: 6 points to 47 Ireland: 2 to 42

9 Research Agenda on MS Finland Belgium Italy Ireland Luxembourg Switzerland Lithuania Netherlands Striking difference between 29/211 : 1 points to The MS societies in the following countries do not have access to grants/ schemes for research and do not have any kind of influence on the national research agenda on MS: Belarus, Bulgaria, Croatia, Czech Republic, Estonia, Hungary, Malta, Poland, Portugal, Romania, Serbia, Slovakia and Spain.

10 Employment Finland Netherlands Belgium Switzerland Italy Romania Poland Serbia Czech Republic Portugal Ireland Luxembourg Spain Croatia Hungary Malta Estonia Lithuania Slovakia Belarus Bulgaria Striking differences between 29/211 Switzerland: points to 32 Portugal: 11 to Spain: 4 to Bulgaria: to

11 Empowerment of PwMS Italy Belgium Netherlands Slovakia Ireland Poland Portugal Czech Republic Romania Finland Hungary Luxembourg Lithuania Serbia Switzerland Belarus Spain Estonia Malta Croatia Bulgaria Striking differences between 29/211 Poland: points to Lithuania: to Switzerland: to Estonia: to Croatia: to

12 Reimbursement of costs Switzerland Netherlands Luxembourg Belgium Italy Czech Republic Finland Slovakia Croatia Ireland Estonia Hungary Malta Belarus Spain Portugal Serbia Lithuania Poland Romania Bulgaria Striking differences between 29/211 Estonia: points to Bulgaria: 17 to Bosnia: 9 to 1

13 Data collection Malta Croatia Slovakia Only 1 countries have stated having national MS registers:,, Croatia,,,,,, Malta,,, Slovakia,, and. In 29, countries stated having national MS registers:,, Croatia,,,,, Latvia, Malta,,, and.

Romania Lithuania Serbia Belarus 3 4 7 7 7 9 9 9 11 12 12 14 14 1 1 1 1 1 1 2 4 6 12 14 16

14 Medication on the market Bulgaria Ireland Italy Malta Croatia Spain Slovakia Luxembourg Portugal Finland Switzerland Hungary Estonia Netherlands Belgium Czech Republic Poland Romania Lithuania Serbia Belarus Striking differences between 29/211 Bulgaria: 9 points to 1 Malta: 7 to : 1 to 7 Czech Republic: to

For further information, please contact: Elisabeth Kasilingam Elisabeth.kasilingam@emsp.

15 For further information, please contact: Elisabeth Kasilingam The European Multiple Sclerosis Platform Rue Auguste Lambiotte 144/ B-3 Bruxelles

Identification of the respondent: Fields marked with * are mandatory.

Identification of the respondent: Fields marked with * are mandatory. Towards implementing European Public Sector Accounting Standards (EPSAS) for EU Member States - Public consultation on future EPSAS governance principles and structures Fields marked with are mandatory.