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. Consequently, this can result in enabling the use of registries for questions of safety and efficiency of MS therapies in the future.

Another key priority formulated by the initiative is to support the re-use and request-based pooling of data when necessary. With this priority, MSDA aims to tackle the challenge of data sharing.

During the last 9 months, the MS Data Alliance team has been working hard to make all this happen. Here are their main achievements in 2019 so far, as well as their plans for the rest of the year.

Bringing the alliance to the next level

The MS Data Alliance website went live in May, but this was not the only platform where the project went public. MSDA was also well represented at important conferences like the one of the European Institute for Innovation through Health Data (i-HD) in Finland.

Similarly, in September the MSDA team was pleased to join the Patient Engagement Congress of the European Patients’ Forum (EPF) in Belgium, as well as the ECTRIMS Congress in Stockholm. Their biggest achievement was at ECTRIMS where they were present with a dedicated stand, held two info-sessions and organised a very successful industry breakfast meeting.

Setting up the framework for a long-term collaboration

Among others, the project team developed the MS Data Alliance strategic plan and budget for 2020-2023 and outlined the draft concept note of the organizational structure beyond 2019. Moreover, they have been quite successful in securing the financial sustainability of MS Data Alliance.

Promoting trustworthy and transparent use of RWE

In 2019, MSDA developed the topics for promoting trustworthy and transparent practices in the way Real World Evidence (RWE) is used. In this respect, as a next step, they are planning to organise several educational sessions to ensure that the developed topics are well-understood among those who they were meant for.

A European minimal data set for MS

The recruitment of registries was continuously ongoing throughout the year, as a result of which 4 new registries have accepted to take part in the MSDA initiative. The meta-data of 10 registries is now available and a minimal data set has been defined and is being tested for 2 pioneering registries.

MSDA Stakeholder Engagement Meeting in Baveno

The last three months of this 2019 will be all about finalising a new sustainable governance and continuing to reach out to all the stakeholders. On 20 November 2019 the MS Data Alliance team is gathering the entire community of stakeholders in Baveno, Italy for a Stakeholder Engagement Meeting. Besides raising awareness about the importance of research using real-world MS data, coming together in Baveno will help the initiative to lay the foundations for the next steps.

EMSP’s member MS Societies have received an invitation from the European Charcot Foundation, the lead organiser of the event. If your organisation hasn’t secured its place yet or in case of any questions or doubts, please get in touch with charcot@seauton-international.com