MS Data Alliance - Educational Program

In 2023, the MS Data Alliance launched its global Educational Program “How to Set Up a Registry?”—a practical, five-part webinar series created in collaboration with the European MS Platform (EMSP) and partners in Latin America (LACTRIMS), where the full program was also delivered in Spanish.

Developed to support clinicians, researchers, patient organisations, and new data initiatives, the program offers clear, experience-based guidance on the essential steps of establishing a real-world MS registry. Each topic combines expert introductions with real-life testimonials from our international Champions, who share insights from registries they have built and operated around the world. An introductory video provides the broader context and goals of the series.

The Educational Program is organised around five core topics.
Click on any topic to access the Champions’ recordings and resources:

1. Why set up a registry? – The value of real-world MS data
2. What to collect? – Minimal datasets and recommendations for data collection
3. How to collect? – Data acquisition software systems
4. How to ensure privacy and trust? – Storage, data protection and governance
5. What’s next? – Inspiring grand opportunities and future directions

You can explore the full series—including the introductory video and all Champion contributions—via the links attached to each topic.