Recent and upcoming activities

Addressing Global Data Sharing Challenges - What did we learn from COVID-19?

Global data sharing is challenging and time-consuming. Heterogeneity across data collection efforts, ethical concerns, privacy issues and other sociological and technical complexities can slow down large scale global data sharing initiatives. 

Mid-march 2020, the MS Data Alliance (MSDA), a global multi-stakeholder collaboration working to accelerate research insights for innovative care and treatments in people with Multiple Sclerosis (MS), was contacted by the Multiple Sclerosis International Federation (MSIF). As the COVID-19 pandemic unfolded across the globe, there was an urgent need to gather and share information to enable evidence-based decision making on the clinical management of Multiple Sclerosis (MS) during the pandemic, and to inform future research.

To accomplish this, the MSIF and the MSDA teamed up together with many other stakeholders and data partners and initiated the global initiative referred to as the “COVID-19 in MS: a global data sharing initiative” (GDSI). Adhering to unseen timelines, we managed to achieve insights on the effect of COVID-19 in MS within a few months.

During this virtual MSDA Stakeholder Focus Group, we reflected upon the major lessons learned during this initiative and brainstormed on how we can incorporate these lessons in our ambitions moving forward. We are happy to share with you the output of the meeting.

What did we learn in 2020 and what should be our ambitions moving forward?

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Break-out sessions 


2020 was dominated by COVID-19 and for the MSDA this implicated that we worked on the Global Data Sharing Initiative (GDSI) since mid-March. In this initiative, the MSDA and MS International Federation (MSIF) teamed up to give answers to the most urgent questions people with MS and their care-givers were struggling with during the pandemic. We learned a lot from this global data project and therefore 2020 was an inspiring year for the MSDA that recently celebrated its first birthday. The lessons learned of 2020 were discussed during four break-out sessions, and will be taken into account to define our ambitions and to move forward.

Topics discussed:

  • Data harmonization and data quality
  • Stakeholder outreach & engagement
  • How to grow our collaborative global data ecosystem?
  • Other research topics and activities

What did we learn/noticed in 2020?

  • Due to the GDSI, sites were enabled to build up local registries to collect data.
  • The core dataset was well chosen and sufficient to answer the urgent questions on MS and COVID-19.
  • Goals are important for data collection design.
  • Early widespread publication is important to allow early adoption of the core dataset.
  • Diversity on where data is coming from: e.g. still limited engagement in Middle-East and North- Africa.
  • Due to the time pressure (we had to act as quick as possible) there were challenges with the quality of the data and harmonization.
  • Providing near-real-time feedback to quality-issues helps improving the local processes for multidata upload.
  • Not everything was done right from the beginning, but we managed to adapt
  • Listening to people and adapting the model through their feedback, did not impose a single data platform. Instead, different ways to share data were accepted (inclusive (google docs) and transparent approach).
  • Not all data partners were familiar with the software to run the federated scripts, but the MSDA guided and helped a lot to make it feasible.
  • Data campaign and MSDA’s data harmonization effort are needed, creating a stronger data-driven and scientifically-driven narrative for decision makers.
  • Number of patient-driven data is much larger than clinician-driven. There might be a link between the two. Future: link between patients and contribution to disease registry would be a major advantage to have.
  • It would provide a tremendous strength.
  • In times of crisis it was possible to get everyone aligned and acting quickly, working in a collaborative way.
  • Future MSDA projects should be unique as well.
  • Legal processes should be in place to speed things up.
  • We cannot over-burden people and expect to downgrade all their day-to-day activities, because of the project.
  • The partners showed tremendous trust and goodwill, building on years of work by MSIF and Progressive MS Alliance.
  • Many patients with MS do not speak English: translation of the survey for patients has been a challenge.
  • We could not have as much interaction with stakeholders as we would have liked (e.g. no formal consortium was created).
  • Multi-stakeholder approach is the best approach.
  • The patient community is vital.
  • We should listen to the perspective of allied healthcare professionals (nurses, assistants, managers, front line staff).
  • More biopharma involved, perhaps more medium term
  • Digital technology companies, e.g. data collection, connect data silos, greater interoperability

GDSI Stakeholder perspectives and lessons learned - interviews:

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Original plan 2020, but cancelled/changed due to COVID-19


EMSP Annual Conference, 7-9 May 2020 - Cancelled

The MSDA organized a panel debate on the relevance of MS data monitoring for progressive MS during the EMSP Annual Conference “Understanding Progressive MS”. Due to COVID-19, the EMSP Annual Conference (7-9 May 2020, Madrid, Spain) was cancelled. The 2021 EMSP edition will be virtual.

 Link to EMSP Annual Conference website


International Progressive MS Alliance, June 2020 - Cancelled

The MSDA was invited to present a lecture on “Leveraging registries through data sharing” as part of the session “What we can learn from patient registries and cohort studies” at the Fourth Scientific Congress of the International Progressive MS Alliance.

This multi-disciplinary and international conference would have featured presentations and discussions in progressive MS focused on “Linking Global Initiatives”, with the goal of painting a landscape of research initiatives connected to progressive MS and identifying potential areas of untapped collaboration and synergy between these initiatives.

It would have brought together leaders in the MS movement to better understand the global landscape of research focused on progressive MS.

Link to International Progressive MS Alliance website


8th Joint ACTRIMS-ECTRIMS Meeting, 9-12 Sept. 2020 – MSVirtual instead

In collaboration with ACTRIMS, the MSDA was organizing a workshop for clinicians, researchers and data custodians to inform people and identify collaboration opportunities. Due to COVID-19 the conference was cancelled. However, we participated in the online MSVirtual Conference (replacing the ECTRIMS/ACTRIMS conference) in September.


RUCTRIMS, 24-26 Sept. 2020 - Cancelled

In collaboration with RUCTRIMS, MSDA would host a satellite symposium to inform the broader audience about the MSDA activities as well as to showcase local success stories using real-word MS data.
In addition, MSDA would host, during the RUCTRIMS conference, a workshop targeting clinicians, researchers and data custodians. This workshop would have focused on identifying the challenges that arise with scaling-up real-world MS data and identify next steps to improve the use of real-world data in the region. 


Central-Eastern Europe Event, October 2020 - Cancelled

We aimed to target the Central Eastern European (CEE) Region. We teamed up with Data Saves Lives and the European Health Data and Evidence Network (EHDEN). EHDEN is one of the largest Innovative Medicine Initiative (IMI2) project involving real-world health data. It consists of a consortium of 22 partners which will operate in Europe from 2018 to 2024. EHDEN was launched to address the current challenges in generating insights and evidence from real-world clinical data at scale, to support patient, clinicians, payers, regulators, governments, and the pharmaceutical industry in understanding wellbeing, disease, treatments, outcomes and new therapeutics and devices. EHDEN, Data Saves Lives and the MSDA planned to co-host a joined two-day event in October 2020.

We planned to target local CEE representatives of following stakeholders: people with MS, patient societies, clinicians, regulatory decision makers, payers, regulators, governments and industry and to touch upon the different aspects of real-world data handling and analysis (data collection, integration, harmonization and analysis). An overview of challenges and opportunities that arise with scaling-up RWD in the CEE region in combination with a road map on next steps to improve the position of CEE in the RWD landscape was the aim of the event. However due to COVID-19, the event was cancelled.

Once on-site international workshops and conferences are possible again, we will plan again educational sessions for the patients and their representatives.


11th LACTRIMS Congress, 4-7 Nov. 2020 – RWE Virtual Symposium instead

In collaboration with LACTRIMS, the MSDA would have hosted a workshop targeting clinicians, researchers and data custodians to identify the challenges that arise with scaling-up real-world MS data and to identify next steps to improve the use of real-world data in the region.
Next to this, the MSDA was invited to give a plenary talk to inform the broader audience about the initiative. 

Link to LACTRIMS 2020 website


6th MENACTRIMS Congress, 20-21 Nov. 2020 - Cancelled

In collaboration with MENACTRIMS, the MSDA would have hosted two workshops (one targeting clinicians, researchers and data custodians, whereas the other talk would have targeted people with MS/patient representatives). The focus of these workshops was on identifying the challenges that arise with scaling-up real-world MS data and on identifying next steps to improve the use of real-world data in the region.

Next to this, the MSDA was invited for two plenary talks to inform the broader audience about the initiative: one talk targeting clinicians, whereas the other talk would have targeted people with MS/patient representatives). 

Link to MENACTRIMS website


Digital Annual RIMS Conference, 3-5 Dec. 2020

The Annual RIMS Conference was scheduled in June 2020 in Belgium. However, due to COVID-19 the conference was organized virtually in December 2020.
The MSDA was invited to give a lecture about “Fair data of next-generation management of Multiple Sclerosis” as part of the session “Creating synergies to optimize practice and research” during the digital Annual RIMS Conference “Collaborate and engage in personalized rehabilitation” on Saturday 5 December, 2020. 

Link to Annual RIMS Conference website.

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.


First MSDA