MS Data Alliance aims at influencing a mind-shift on the vital importance and multifaceted usability of good quality real-world data – urgently needed as additional evidence for proper decision making by health authorities.
Since the ECTRIMS congress 2017, EMSP played a key role in discussing with members and partners EMA recommendations on core data elements to be collected by MS registries, common procedures, consents, governance, data quality and registry interoperability. During 2018, EMSP joined forces with the University of Hasselt and began a dedicated working group to further develop the MS Data Alliance (MSDA) project proposal.
The MSDA is based on two core components:
- The “MSDA toolbox” providing three innovative tools to registries for better data sharing; and
- The “MSDA Academy” for motivation, engagement and education of the MS community.
The project proposal was presented to a wider group of stakeholders during dedicated sessions. The MS Data Alliance is designed to boost research and enable better outcomes for the broader MS community with a focus on Patient Reported and Patient Relevant Outcomes (PRO).http://msdataalliance.com/