MSDA Stakeholder Engagement Meeting, 20 Nov. 2019 - MS Data AllianceMS Data Alliance

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umbrella organisations from 24 countries and 5 continents, made this first meeting a true success.聽聽</span></h5> <h3>Meeting objectives:</h3> <ul> <li>inform all stakeholders about the mission, vision and strategic objectives of the MSDA</li> <li>further engage our stakeholders to be involved in MSDA</li> <li>facilitate a multi-stakeholder discussion, about how real-world data (RWD)/real-world evidence (RWE) can become the co-driver of (regulatory) decisions.</li> </ul> <h3>Meeting agenda:</h3> <ol> <li>An introduction and short presentation of the MSDA history, the MSDA 2019-2021 strategic objectives (through the MSDA Academy and MSDA Toolbox) and an overview of the meeting participants <span style="font-size: 10pt;"><em>(Dr Liesbet Peeters)</em></span>. </li> <li>Presentations and a panel discussion on how does/would/could/should Big Data benefit different stakeholders with invited speakers addressing the perspective of the different stakeholders. <span style="font-size: 10pt;"><em>(Chairs Prof Giancarlo Comi and Mr Piet Stinissen)</em></span> <ul> <li>The patient’s perspective <span style="font-size: 10pt;"><em>(Mrs Jana Hlavacova)</em></span></li> <li>The industry’s perspective <span style="font-size: 10pt;"><em>(Mr Brendan Barnes, European Federation of Pharmaceutical Industries and Associations – EFPIA)</em></span></li> <li>The researcher’s perspective <span style="font-size: 10pt;"><em>(Prof Jeffrey A. Cohen, Cleveland Clinic)</em></span></li> <li>A regulator’s perspective <span style="font-size: 10pt;"><em>(Mr Xavier Kurz, European Medicines Agency – EMA and Mr Francis Aricxk, National Institute for Health and Disability Insurance Belgium – NIHDI)</em></span> </li> </ul> </li> <li>Success stories of scaling up real-world MS data showcasing the value of real-world MS data through past, recent and future scientific insights that were achieved using real-world MS data <span style="font-size: 10pt;"><em>(Chair: Prof Bart Van Wijmeersch)</em></span> <ul> <li>An overview of observational data in MS <span style="font-size: 10pt;"><em>(prof Maria Trojano, University of Bari)</em></span></li> <li>MSDA’s activities on cataloguing and publishing descriptions of different data sources <em><span style="font-size: 10pt;">(Dr Liesbet Peeters, Hasselt University)</span></em> </li> </ul> </li> <li>Why are data harmonisation strategies relevant and showcase of initiatives <span style="font-size: 10pt;"><em>(Chair: prof Patrick Vermersch)</em></span> <ul> <li>Big MS Data Network <span style="font-size: 10pt;"><em>(Prof Jan Hillert, Karolinska Institute)</em></span></li> <li>Patient Reported Outcomes for MS <span style="font-size: 10pt;"><em>(Dr Paola Zaratin, Italian MS Society)</em></span></li> <li>European Health Data & Evidence Project – EHDEN <span style="font-size: 10pt;"><em>(Dr Peter Rijnbeek, Erasmus MC Rotterdam)</em></span></li> <li>MSDA Switchbox <span style="font-size: 10pt;"><em>(Tina Meisner, University Medical Center G枚ttingen)</em></span> </li> </ul> </li> <li>How engage and serve patients through co-creation of value from their data and grow their trust and confidence?聽 <span style="font-size: 10pt;"><em>(Chair: Mr Peer Baneke)</em></span> <ul> <li>MSDA patient engagement strategy <span style="font-size: 10pt;"><em>(Mr Pieter Van Galen, EMSP)</em></span></li> <li>Panel debate <span style="font-size: 10pt;"><em>(Mr Pieter Van Galen, EMSP, Mrs G枚zde Susuzlu, EPF, Prof. Dipak Kalra, European Institute for innovation through health data, Mrs Ruth Bentley, MS Brain Health, Ms Stephanie Ribbe, Novartis, Mr Rod Middleton, UK Registry)</em></span> </li> </ul> </li> <li>Discussion of examples of good practice of collaborative research and data sharing principles <span style="font-size: 10pt;"><em>(Chair: Prof Maria Pia Sormani, prof Dipak Kalra, i-HD)</em></span> <ul> <li>Panel dabate <em><span style="font-size: 10pt;">(Prof Jan Hillert, BMSD, Dr Orla Gray, MSBase, Prof. Jeffrey Cohen, MSPaths, Mr Alexander Stahmann, German Registry, Robert McBurney, iConquerMS, Prof. Maria Trojano, Italian Registry)</span></em> </li> </ul> </li> <li>Next steps and future plans <span style="font-size: 10pt;"><em>(Dr Liesbet Peeters)</em></span></li> </ol> <h3>Full report:</h3> <p>Access to the <span style="color: #f68d2e;"><a style="color: #f68d2e;" href="https://msdataalliance.com/wp-content/themes/msdataalliance/assets/files/20200218_Report_MSDA_Stakeholder_Engagement_Meeting.pdf" target="_blank" rel="noopener noreferrer">full report and ppt presentations</a></span> of the meeting.</p> <p> </p> </div> </div> </div> </div> </div>  <div id="fb-root"></div> <script> (function(d, s, id) { var js, fjs = d.getElementsByTagName(s)[0]; 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