Planned Activities 2020: cancelled/changed due to COVID-19
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.
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).
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.