MCB: MS Registries with MS Societies in the Balkans region

18.12.2025

The Workshop on MS Registries with MS Societies in the Balkans regional, part of EMSP’s Membership Capacity Building Programme, was held in 2022.  In this article, you can explore the main outcomes of the workshop and access the presentation slides for further learning.

Objectives

1. Understanding better the stages where different MS Societies are from developing MS registries
2. Identifying roadblocks faced and potential solutions
3. Drafting a first roadmap together

Introduction

MS Data Alliance (MSDA): EMSP more than a decade ago identified the value of real world/registry data to transform the care of people with MS: importance and use of registry for advocacy and market access negotiation. For the need for better data, MSDA came to life starting with a flagship project on COVID-19 in MS that was launched at the beginning of the pandemic as a global data sharing initiative, closely with MSIF and many other collaborators across the globe to address the effect of COVID-19 on MS.

Within few months, data across the globe were collected, to result in the largest dataset available on COVID-19 in MS which led to updating guidelines on COVID-19 and MS. This clearly showed the importance of working with real world data that could be from registry data or data from electronic health applications. Key challenges learned from this experience is, although challenging, it is possible to set-up large-scale collaborative efforts to address urgent questions related to MS.

However, many of the complex ‘data science’ concepts are not easily understood, specifically for individuals with a non-tech background. That’s why education materials and tools are needed to overcome challenges and the importance to involve different stakeholders who need to work together on this. The MSDA team has the experience on how to set up a registry, including governance, what and how data should be collected, consortium agreements, etc. with the MSDA toolbox, consisting of open-sourced tools (e.g. the MSDA Catalogue) offered to be used based on needs.

Roadmap towards MS data registries

It is clear that there is no one-size-fits-all roadmap when it comes to setting-up a successful national registry. However, pragmatically, there are 5 phases to go from an idea all the way to setting up a registry → Breaking steps down into concrete phases, with the purpose to learn in which phase each country is to tailor feedback on the needs during the workshop:

1. Idea to set up a registry:
   a. Aiming to identify the idea
   b. Who are other stakeholders who are interested in joining efforts: trying to identify a small group of pioneer (e.g. 2-3 most motivated clinicians, who are in the society on board, is there anybody among regulators who can support this idea?) It takes time to allocate who the involved stakeholders and group of pioneers will be
   c. Why do we want to set up the registry: what is the purpose? Is it solely to raise awareness or will the same data initiative be used for scientific research?
   d. Defining mission, vision and values
2. Team formation:
   a. How to we work together, organize ourselves and how do we make decisions?
   b. How to ensure trust among the whole “team” by defining governance and principles but also inviting trust from other people
   c. How do we get this initiative funded on the short and long term, defining business and sustainability model
3. Towards the concept note
   a. What do we need to achieve and defining the list of variables that will act as a dictionary?
   b. How to collect the data needed by defining management of data, strategy, information technology and safety, privacy, what will be the ethical framework?
   ➔ To reach the mid-milestone here:
   *** Concept note that acts as a milestone: Word document, slide deck: summarizes how and with whom this will be done)
4. After the concept note, moving towards building the minimal viable product (the product with enough features to attract early adopters and validate the idea)
5.  Then to move to piloting first data collection and learning from the process for improvement

The aim after the roadmap introduction above was to discuss with each MS society where their country is from the first 3 phases to reach their concept note.

Power of choice

Again, it was highlighted that to set-up a registry – there is no one-size-fits-all approach or roadmap. There are many difficult questions to be addressed. For these questions, different answers are possible, and it heavily depends on the specific situation of a particular initiative what will work (and what will not work). Therefore, the participants were encouraged to practice what it is referred to as ‘the power of choice’ – referring to the TedX talk ‘How to make hard choices’ of Ruth Chang. There are no right or wrong decisions. There are only different approaches and some specific situations may need a specific approach.

What defines a difficult choice:

If the options are measured with different and conflicting values. For example, if you like doughnuts, then eating 2 doughnuts is better than one doughnut. If 2 jobs are identical to you, but one pays more, then it’s not a difficult choice. These are not difficult decisions.
The choice becomes difficult when the 2 options rely on different values that are both important to you. A doughnut is a good option is you prefer something fast, or sweet taste. But if you prefer healthy options, looking for fibers, longer energy levels, then muesli is a better option. If you increase the quantity of one option does not mean it’s better than another option that has different values.

• Realize that you have the power of choice, to choose which path is more relevant for you: When it comes to handling data, there are always reasons to take a decision, or take another decision. You can proceed when you have a clear balanced vision of what you want plus understanding what options you have
• Examples of options in registries: one is not better than the other, they are just different and would require a different approach
  • In the first phase: examples on decisions could be if the registry will be regional vs national, if it’s part of a research approach, identifying why people are interested or not interested in having a registry
  • In the second phase: example of decision on governance on how decisions are made and how the group will work together. It could be centralized or federated
  • In the third phase: physicians vs patients to collect the data depending on the type of data to be collected

Way Forward

Important to nail down what is the first domino that people can do? What is a feasible step that you can do today or upcoming weeks with resources you currently have that you believe will keep you going

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