MS Data Alliance
The MS Data Alliance is a global multi-stakeholder non-for-profit organization that strives to overcome the sociological and technical challenges that arise with the transformation of real-world MS data into real-world evidence, which will provide necessary insights to improve the care of people with Multiple Sclerosis (MS).
Summary
Within the MS Data Alliance ecosystem, we built bridges between all stakeholders and provided them with the necessary tools for the specific challenges they are struggling with. Therefore, the MS Data Alliance handled a dual approach:
- In the “Academy”, we focused on raising awareness about the importance of using real-world MS data, building a multi stakeholder ecosystem and promoting trustworthy use.
- With the “Toolbox”, we focused on developing and implementing tools to reduce the time needed to find, assess and reuse real-world MS data.
The MS Data Alliance was a global non-for-profit multi-stakeholder collaboration working to accelerate research insights for innovative care and treatment for people with MS. We envisioned a world in which multiple stakeholders collaborate in the trustworthy use of real-world health data to accelerate data-driven insights necessary to transform the care of people with multiple sclerosis (MS). The MS Data Alliance was n acting under the umbrella of the European Charcot Foundation, and was financially supported by a combination of industry partners, including Novartis, Merck, Biogen, Janssen, Bristol Myers Squibb and Roche.
Role of UHasselt
UHasselt was a core partner of the MS Data Alliance and Liesbet M. Peeters was chair of the Core Group. This Core Group of the MS Data Alliance (officially, until 31 December 2023) consisted of 6 core partners:
UHasselt, KU Leuven, UMC Göttingen, EMSP, i~HD and ECF. Together they had the ultimate responsibility for the operations of the MS Data Alliance and they are responsible for the strategic direction of the organization, its financial succession and its relationship with their partners. The Core Group received formal advice from an Advisory Group that consisted of carefully selected key opinion leaders representing different stakeholders. The daily operations of the MS Data Alliance were taken care of by the operational team, mainly by UHasselt team members.
Publications
- Peeters LM, Parciak T, Kalra D, et al. 2021 Multiple Sclerosis Data Alliance - A global multi-stakeholder collaboration to scale-up real world data research. Mult Scler Relat Disord. (link)
