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MS Data Alliance
The MS Data Alliance (MSDA) is a multi-stakeholder collaboration working to accelerate research insights for innovative care and treatment for people with MS.
The MSDA believes data can transform the care of people with MS.
It envisions 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.
The MS Data Alliance joins patient (representatives), data custodians, data science experts, clinicians, (MS) umbrella organisations, industry and regulatory decision makers. To date, stakeholders from over 30 countries have already shown interest in the initiative and the MSDA community is expanding rapidly.
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 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.
COVID-19 and MS – Global Data Sharing Initiative
As the COVID-19 pandemic unfolds across the globe, MS Data Alliance (MSDA), operating under the umbrella of the European Charcot Foundation, and the MS International Federation (MSIF) are spearheading a Global Data Sharing Initiative.
The demand for data on the impact of the novel coronavirus on people with Multiple Sclerosis (MS) is growing rapidly. This information is crucial for people with MS and clinicians to make evidence-based decisions on how to manage their condition during the pandemic or in case of a COVID-19 infection.
The COVID-19 & MS Global Data Sharing Initiative aims to:
- Scale-up COVID-19 data collection efforts
- Achieve insights to support care during the pandemic
- Act as a stimulus to steer ongoing and future scientific research
in order to support people affected with MS, healthcare professionals and researchers during the pandemic and ultimately save lives.
By working together we can answer pressing questions about how COVID-19 affects people with MS and their treatment options.
Find out how you can help!
- I have MS
- I am a healthcare professional
- I am a data custodian
- I work or volunteer for an MS organisation
Download pdf for more detailed information on the Global Data Sharing Initiative.
Report of the first MSDA Stakeholder Engagement Meeting
EMPS jointly with Hasselt University and the European Charcot Foundation hosted, in the margin of the 27th Annual Meeting, the first MSDA Stakeholder Engagement Meeting on 20 November 2019.
The attendance of nearly 80 on-site participants representing MS patients (societies), MS researchers, industry, regulatory decision-makers, MS data custodians and MS umbrella organisations from 24 countries and 5 continents, made this first meeting a true success.
The objectives of the meeting were:
- to inform all stakeholders about the mission, vision and strategic objectives of MSDA
- further engage stakeholders to be involved in MSDA
- facilitate a multi-stakeholder discussion about how real-world data (RWD)/real-world evidence (RWE) can become the co-driver of (regulatory) decisions.
