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How to set up a Multiple Sclerosis Registry? MSDA Academy Webinar Series


One of the key strategic objectives of the MSDA Academy is to promote trustworthy and transparent practices in the use of real-world MS data.

In the frame of the MSDA Educational programme we aim to engage all MSDA stakeholders including people affected by MS, the patients advocates and organisations, neurological medical associations with interest in setting up MS registries.

MSDA Academy Webinar Series Schedule

MS Data Alliance has developed a set of webinars to support the National Multiple Sclerosis societies to develop health data registries and cross-national data collection and sharing in the European region.

Join us in February-March 2023 to learn more about effective patient engagement in data collection, and ultimately in R&D, innovation and policy decision-making if you are an MS patient representative or other stakeholders interested in setting up MS registries from Central and Eastern European region and Balkans region.

. Check out the schedule of the webinars below:

  1. Why to set-up a registry? Value of real-world MS data
    Date and time: Wednesday 8 February 2023 (from 10:00 to 11:30 CET)
  2. What to collect? Harmonised datasets and recommendations for data collection
    Date and time: Wednesday 22 February 2023 (from 10:00 to 11:00 CET)
  3. How to collect? Data acquisition software systems
    Date and time: Wednesday 8 March 2023 (from 10:00 to 11:00 CET)
  4. How to ensure privacy and trust of stakeholders? Storage, data protection and governance
    Date and time: Wednesday 22 March 2023 (from 10:00 to 11:00 CET)
  5. What’s next? Inspiring grant momentums in the real-world MS data arena?
    Date and time: Wednesday 5 April 2023 (from 10:00 to 11:00 CET)

Format: Online, Zoom link to be provided to registered participants

Register here

If you are interested but have questions to ask before the registration, please contact EMSP at projects@emsp.org.

Supporting materials: introductory video https://www.msdataalliance.org/academy/educationalProgram

If you would like to learn more, please visit the MSDA website: https://msdataalliance.com/.

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