MILESTONES. European Register for Multiple Sclerosis - a Tool to Assess, Compare and Enhance the Status of People with MS throughout

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Jared Fleming
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1 European Register for Multiple Sclerosis - a Tool to Assess, Compare and Enhance the Status of People with MS throughout the EU MILESTONES Project co-funded by the Public Health Program of the European Union from July 2011 till 2014

2 MILESTONES 2011 EMSP successfully closed the negotiations on the EUReMS cofunding by the European Commission Kick off meeting, 4 th July Luxembourg and Terms of reerence of the project EUReMS Website launched EUReMS consensus meeting with Scientific Advisory Board and Stakeholders, 19 th October Amsterdam Steering Committee adopted the EUReMS Consensus Statement 14 th December 2011 EUReMS Project Partners Collaboration Platform functional on line 1

3 EUReMS Consensus Statement Rationale behind EUReMS The European Commission through its latest Communications on health issues has expressed its will to tackle more efficiently health inequalities faced by EU citizens e.g., the provision of health services, the design of health promotion and health protection activities, as well as the improvement in living and working conditions. With regard to Persons with Multiple Sclerosis (PwMS), across European countries there is currently a widely recognized lack of data on: - Disease epidemiology, including age and gender specific trends; - Actual access to new disease modifying and symptomatic treatments; - Long-term efficacy, safety and cost-effectiveness of disease modifying drugs; - Societal costs and ways to best allocate socioeconomic resources; - Degree of access to health care services and their quality; - Quality of life priorities of PwMS. A comprehensive approach to data collection in MS is needed addressing these issues, building on existing systems for MS data collection, but bridging their gaps and limitations by incorporating additional purposes, standardized methodological strategies and ensuring its validity across different European populations. EUReMS Vision EUReMS strives to become an infrastructure for data collection, data analysis, interpretation and dissemination of results in MS with European cross-border validity, aimed at ultimately improving the quality of life of PwMS in Europe, and minimizing regional inequalities in MS management, including the access to EMA approved MS disease modifying and symptomatic treatments, and to standard quality health care services. EUReMS will serve as a tool for epidemiological surveillance of MS in Europe and will contribute to better understanding and management of MS, and to defining the actual societal burden of the disease. EUReMS will ultimately support PwMS and their carers in their daily lives as well as MS health professionals and the scientific MS community at large. EUReMS Mission In order to fulfil its aims, EUReMS mission will pivot on four areas of actions: 1. MS epidemiological and clinical surveillance across European countries, including the assessment of the MS burden in Europe 2. Assessment of long-term efficacy, safety and cost-effectiveness of MS disease modifying and symptomatic treatments across European countries 2

4 3. Assessment of provision and quality of health care services across European countries, and 4. Assessment of PwMS quality of life, the burden of symptoms and socio-economic aspects from the patient s perspective across European countries In particular, these actions will imply the following outcomes: a. provide reliable and validated data from different sectors (health care, public health, lay community/pwms), over large population-based and clinical cohorts of PwMS with varying susceptibility to the disease and different health care and health economic contexts; b. provide longitudinal data on medical and socioeconomic status of PwMS to be used as outcome measures in order to assess and compare the impact of medical and social services offered to PwMS, and possible disparities, across European countries; c. provide large scale data on the long term effectiveness, safety, and comparative effectiveness of disease modifying as well as symptomatic drugs in relation to the socio-economic impact, by aggregating data at European level; d. monitor trends in MS epidemiology in Europe, including gender and age specific incidence and prevalence; it will provide insights on the role of possible etiological agents, the causes and disease natural history across European populations; e. comprise patient-reported outcome measures; f. enable reliable comparisons across European countries by common shared methodology, standardized data collection and tools to access and analyse data from various sources. The outcomes of EUReMS mission from the four different areas will have short-term and long-term impacts in the MS domain: the former representing the actual EUReMS project products, the latter representing EUReMS sustainability over time. EUReMS Overall Strategy EUReMS will: - Use a formal description of data quality, over large population-based and clinical MS cohorts to enable comparisons across European countries; - Jointly develop standard definitions of terminology, specifications of data structure, data collection and data management processes to allow corresponding comparability of data and comprehensive data analysis at a European level; - Customize methodology and strategies to collect and validate MS data from different sectors (health operators, PwMS, lay community, MS societies, local health policy makers) and to comply to the Mission; - Establish a working platform (e.g., a European Reference Platform for MS) to support collaboration and ensure sustainability. 3

5 MILESTONES 2012 Survey and analysis of national and international MS registers, January May 2012 Project Meeting, 20 th -21 st May 2012, Barcelona: - Draft proposal for EUReMS Core Data Set - Draft Proposal for EUReMS Governance Stakeholders Consultations, May - September 2012 Project meeting and Scientific Advice during the ECTRIMS congress October 2012, Lyon Start of the Register: - EUReMS template for data collection - EUReMS Code of Conduct and Contracts with MS data providers - SOPs for the working processes of EUReMS 4

Board of Member States ERN implementation strategies

Board of Member States ERN implementation strategies January 2016 As a result of discussions at the Board of Member States (BoMS) meeting in Lisbon on 7 October 2015, the BoMS set up a Strategy Working