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Empowering MS Societies – Building Effective Registries for Improved Care and Advocacy: A Membership Capacity Building Workshop with MS Data Alliance

13.12.2023

As part of its Membership Capacity Building (MCB) Programme, the European Multiple Sclerosis Platform (EMSP), in close collaboration and leadership of the MS Data Alliance, has conducted an co-creative and interactive workshop on building effective MS registries, which took place in Brussels, on 8 December 2023.

What was the aim of the workshop?

The workshop aimed to support and build the capacity of EMSP member organisations in the Western European region who are planning to expand their activities in setting up MS registries in their countries. The objectives of this workshop were to empower participants with comprehensive knowledge and tools to confidently navigate the complexities of setting up an MS registry, fostered in a collaborative environment where MS Societies can together co-create solutions and share experiences, enabling them to learn from each other’s experiences and best practices. The workshop also focused on equipping participants with the skills to transform research questions into actionable plans, aiming to leverage registry data into meaningful insights and improved MS care and advocacy efforts.

Who was there?

MS societies and their respective representatives who attended the workshop included the national Belgian MS society: Christiane Tihon; MS Ireland: Aoife Kirwan and Alison Cotter; MS society in Luxembourg: Anne Leurs and Isabelles Cames, and the MS Society Netherlands represented by Robert van den Bos.

The workshop was steered by MS Data Alliance team and EMSP, led by Dr. Liesbet M. Peeters, Chair of MSDA with the support of Dr. Ilse Vermeulen, Coordinator of MSDA, and Dr. Lotte Geys, Governance Manager of MSDA with the support of Elisabeth Kasilingam, EMSP CEO, Patricia Moghames, EMSP Programme Coordinator, Juris Lavrikovs, Senior Communications and Membership Coordinator. Joining the team with their expertise in establishing and maintaining successful MS registries were Dr. Rodden Middleton from the UK MS register and Herbert Temmes, EMSP’s president and the president of the German MS Society.

Why is this topic important for MS Societies?

This workshop was based on an expressed priority by the representatives as part of a Discovery workshop under MCB, end of 2022 where societies prioritised establishing MS registries with their countries as a capacity building need. MS registries are crucial for informing policy and advocacy efforts by providing essential data and insights into MS prevalence, demographic trends, care and treatment as well as risk factors, enabling tailored healthcare planning and resource allocation. By tracking real-world treatment effectiveness and monitoring adverse events, registries contribute to evidence-based guidelines. Patient-reported outcomes included in these registries document the daily challenges faced by people with MS, guiding the development of policies aimed at improving their care and quality of life. Moreover, the data accelerates research, identifying gaps and facilitating evidence-based advocacy that raises awareness, secures funding, and influences policies to better support the MS community.

What was discussed?

Participants were introduced to the key phases involved in establishing an MS registry that provide a structured and holistic approach, guiding participants through the journey of registry creation with participants collaboratively participating, sharing their specific challenges, and together with the rest of the group, brainstorming to come up with solutions.

Participants also had the opportunity to hear from experienced peers in Germany and the UK who have successfully established registries and who have hands-on experience on challenges encountered and overcame, all throughout the discussion.

The workshop also focused on identifying the critical roles that are needed to successfully establish an MS registry, supporting participants to identify those roles within their organisations. The “End-to-End Pipeline” strategy was discussed to equip participants with tools to translate questions they want answered through their future registries into practical insights. The MSDA team also introduced basic data concepts to enhance the participants’ understanding to convert of Real-World Data into Real-World Evidence, such as distinguishing between quantitative and qualitative data, understanding core data sets, comprehending data dictionaries, and working with aggregated data – terms and steps they will need to be familiar with during their next steps.

Participants then discussed with the rest of the group what they think their next actions will be that will take them one step closer in 2024 to establishing a registry in their own country.

In the spirit of shared determination and collective ambition, participants left the workshop not only empowered with knowledge and tools to pursue their plans in establishing MS registries, but also with a profound sense of camaraderie, committed to supporting each other as they work towards realising this impactful vision in 2024 and beyond.