MS Data Alliance
The MS Data Alliance is a collaborative effort to speed up the process of research and innovation for treatments and care for those with MS. In 2022 the MSDA held its 2nd Stakeholder Engagement Meeting on “The use of Great Data and AI to reveal progression in MS” and launched its first Fellowship Programme in order support someone to set up a data initiative in Central and Eastern European or the Balkan Region.
The 'Multiple Sclerosis Data Alliance' (MSDA) aims to implement a minimal data set and quality standards, approved by the European Medicine Agency (EMA), in a variety of MS data registries and cohorts. This improvement of collection and analysis of real-world evidence can result in better research outcomes, as well as informed policies for decision-makers, regulators, and patients.
MSDA seeks to change people's perceptions regarding the high degree of importance and multiple applications of reliable real-world data. This is necessary to ensure that health authorities have adequate evidence to make sound decisions. MSDA’s purpose is to foster research and improve results for those affected by Multiple Sclerosis, with a special emphasis on Patient Reported Outcomes and Patient Relevant Outcomes.
MSDA began as a result of EMSP's endeavours to standardise the collection of MS data in Europe. Now, led by the European Charcot Foundation (ECF), it is an independent multi-stakeholder initiative with EMSP as one of its six main partners. ECF provides the legal entity for the project.
EMSP plays a key part in the project to create and advance the MSDA educational program. This program is intended to supply MS patients, advocates, and people with MS, as well as their family and other stakeholders, with resources on MS data and its application, collection techniques, and how it can ultimately improve the lives of those affected by MS.
On 16 November 2022 the 2nd MS Data Alliance Stakeholder Engagement Meeting on “The use of Great Data and AI to reveal progression in MS” aimed to facilitate and speed-up the interdisciplinary conversations, collaborations and innovations at the intersection of data science and medicine. The event boasted over 65 attendees in person and an additional 100 virtual viewers.
While the meeting was mainly focusing on Artificial Intelligence and Great Data to reveal progression in MS, it was also marked by the announcement of the MSDA fellowship program.
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