Educational Program - How to set-up a registry?
Summary:
One of our key strategic objectives is to promote trustworthy and transparent practices in the use of real-world MS data.
Originally launched in 2023 as a series of webinars by the MS Data Alliance in collaboration with EMSP & LACTRIMS, this Educational Program has since been transformed into a self-paced learning module, where each topic is guided by a subject-matter expert and includes a short PDF, helpful video content, and a self-test for certification.
Designed to support everyone involved in setting up or managing a Multiple Sclerosis registry, the program covers essential topics — from defining your data to building trust with stakeholders and embracing future technologies.
Although the MS Data Alliance has discontinued its activities, we are proud to continue offering this content for the benefit of the MS community worldwide.
Learning module
Topic 1: Why Set Up a Registry?
Topic 1: Why Set Up a Registry?
🧠 Guided by: Dr. Lotte Geys (UHasselt)
Explore why real-world data (RWD) from MS registries is crucial for closing knowledge gaps, improving care, and supporting data-driven decisions. Learn how registries support personalized care and negotiations with regulators and pharma.
📄 Download PDF | 📝 Take self-test
Topic 2: What to Collect?
Topic 2: What to Collect?
🧠 Guided by: Tina Parciak (UHasselt)
Data collection for MS is complex and must be harmonized to be useful. This module introduces minimal vs. core datasets, and how harmonization efforts (e.g., OHDSI) can enhance reuse across registries and research initiatives.
📄 Download PDF | 📝 Take self-test
Topic 3: How to Collect?
Topic 3: How to Collect?
🧠 Guided by: Marcel Parciak (UHasselt)
Understand how digital data acquisition systems (like MSBase) help with structured documentation, quality checks, and data integration. The focus is on supporting both clinical workflows and research use cases.
📄 Download PDF | 📝 Take self-test
Topic 4: Privacy & Trust
Topic 4: Privacy & Trust
🧠 Guided by: Prof. Dipak Kalra (President, i~HD)
Dive into data governance, protection, and transparency — key for building trust among patients, healthcare professionals, and research partners. Includes legal compliance, ethics, risk minimization, and oversight practices.
📄 Download PDF | 📝 Take self-test
Topic 5: What’s Next?
Topic 5: What’s Next?
🧠 Guided by: Prof. Liesbet M. Peeters (UHasselt, Chair MS Data Alliance)
Look ahead to future opportunities for MS data: deep phenotyping, Big Data Spaces, and Artificial Intelligence. Learn how global initiatives and technologies can empower MS research and care.
📄 Download PDF | 📝 Take self-test