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 build bridges between all stakeholders and provide them with the necessary tools for the specific challenges they are struggling with. Therefore, the MS Data Alliance has a dual approach:
- In the “Academy”, we focus 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 focus on developing and implementing tools to reduce the time needed to find, assess and reuse real-world MS data.
Role of UHasselt:
UHasselt is a core partner of the MS Data Alliance and Liesbet M. Peeters is chair of the core group.
The core group of the MS Data Alliance currently (until 31 December 2023) consists of 6 core partners:
UHasselt, KU Leuven, UMC Göttingen, EMSP, i-HD and ECF. Together they have 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 receives formal advice from an advisory group that consists of carefully selected key opinion leaders representing different stakeholders. The daily operations of the MS Data Alliance are taken care of by the operational team.
Publication:
- 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)
Specific projects in context of MSDA:
