MS Data Alliance

The Multiple Sclerosis Data Alliance (MSDA) is a multi-stakeholder collaboration working to accelerate research insights for innovative care and treatments for people with MS. The MS Data Alliance envisage a patient-centred learning health system in which all stakeholders contribute and use big data to co-create the innovations needed to advance the timely treatment and care of people with MS.

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MSDA was originally initiated by EMSP, the University of Hasselt and several project partners as a follow-up of EMSP’s long-lasting efforts to harmonize MS data collection in Europe. Today, the MSDA is an independent multi-stakeholder initiative under the umbrella of the European Charcot Foundation (ECF) with ECF acting as the legal entity, and EMSP acting as one of the 6 main partners.

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One of the main objectives of the ‘Multiple Sclerosis Data Alliance’ (MSDA) is the implementation of a minimal data set and quality standards, approved by the European Medicine Agency (EMA), in as many MS data registries and cohorts as possible. Improving the collection and analysis of real-world evidence can lead to better research outcomes and better informed policies for decision-makers, regulators and patients

MSDA aims to influence 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. It 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).

EMSP’s main role in the project is to contribute to the development and promotion of the MSDA educational program. The educational program aims at providing resources to the MS patients, advocates and individual people with MS, their family and other stakeholders on MS data, its use, the methods of data collection and its ultimate impact on improving the quality of lives of people with MS.

EMSP also played a central role in drafting an educational programme for patients to raise awareness about the importance of research using real-world MS data.

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In 2021, EMSP supported the project by providing the patient perspective in broader consultations online and by supporting the recruitment of national MS registries. Additionally, EMSP hosted a meeting with the European MS societies on the “Design and data considerations for MS registries” in January 2021 (moderated by Professor Dipak Kalra) and another meeting in the framework of the EMSP Membership Communications Network in May 2021.

In July-August 2021 MSDA in collaboration with EMSP conducted a Needs Assessment with all the stakeholder groups. To contribute to this assessment from the patients’ perspective, EMSP collected input from people living with MS and their caregivers via an online survey. The final report of that is available via this link: MSDA Stakeholder Focus Group Report (msdataalliance.com)

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