MSDA Stakeholder Engagement Meeting, 20 Nov. 2019

In the margin of the 27th Annual Meeting of the European Charcot Foundation, MS Data Alliance organised its first MSDA Stakeholder Engagement Meeting. 
The attendance of nearly 80 on-site participants representing MS patients (societies), MS researchers, industry, regulatory decision makers, MS data custodians and MS umbrella organisations from 24 countries and 5 continents, made this first meeting a true success.  

Meeting objectives:

  • inform all stakeholders about the mission, vision and strategic objectives of the MSDA
  • further engage our stakeholders to be involved in MSDA
  • facilitate a multi-stakeholder discussion, about how real-world data (RWD)/real-world evidence (RWE) can become the co-driver of (regulatory) decisions.

Meeting agenda:

  1. 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 (Dr Liesbet Peeters).
  2. 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. (Chairs Prof Giancarlo Comi and Mr Piet Stinissen)
    • The patient’s perspective (Mrs Jana Hlavacova)
    • The industry’s perspective (Mr Brendan Barnes, European Federation of Pharmaceutical Industries and Associations – EFPIA)
    • The researcher’s perspective (Prof Jeffrey A. Cohen, Cleveland Clinic)
    • A regulator’s perspective (Mr Xavier Kurz, European Medicines Agency – EMA and Mr Francis Aricxk, National Institute for Health and Disability Insurance Belgium – NIHDI)
  3. 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 (Chair: Prof Bart Van Wijmeersch)
    • An overview of observational data in MS (prof Maria Trojano, University of Bari)
    • MSDA’s activities on cataloguing and publishing descriptions of different data sources (Dr Liesbet Peeters, Hasselt University)
  4. Why are data harmonisation strategies relevant and showcase of initiatives (Chair: prof Patrick Vermersch)
    • Big MS Data Network (Prof Jan Hillert, Karolinska Institute)
    • Patient Reported Outcomes for MS (Dr Paola Zaratin, Italian MS Society)
    • European Health Data & Evidence Project – EHDEN (Dr Peter Rijnbeek, Erasmus MC Rotterdam)
    • MSDA Switchbox (Tina Meisner, University Medical Center Göttingen)
  5. How engage and serve patients through co-creation of value from their data and grow their trust and confidence?  (Chair: Mr Peer Baneke)
    • MSDA patient engagement strategy (Mr Pieter Van Galen, EMSP)
    • Panel debate (Mr Pieter Van Galen, EMSP, Mrs Gözde 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)
  6. Discussion of examples of good practice of collaborative research and data sharing principles (Chair: Prof Maria Pia Sormani, prof Dipak Kalra, i-HD)
    • Panel dabate (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)
  7. Next steps and future plans (Dr Liesbet Peeters)

Full report:

Access to the full report and ppt presentations of the meeting.