MSDA Stakeholder Focus Group Meeting, Nov. 2020
The aim of this stakeholder meeting is to facilitate a multi-stakeholder discussion about how we envision the MS data ecosystem to further scale-up using trustworthy and transparent practices.
This meeting will set the scene to fine-tune the topics (and priorities) of MSDA educational sessions moving forward as well as provide the basic principles for the governance of the MSDA federated data eco-system.
The meeting will be organised in the margin of the 28th Annual Meeting of the European Charcot Foundation which is taking place in Baveno, Italy, from 19 till 21 November 2020.
- Examples of good practices:
- Which software/tools are currently successfully used and implemented across existing and emerging registries and cohort?
- Which strategies have been used to engage and motivate clinicians and people with MS to participate in MS data collection initiatives?
- What are the advantages and disadvantages of the different approaches?
- What are the most important lessons learned?
- Priorities in knowledge gaps that require scaling-up:
- Rare adverse events
- Pediatric MS
- Long-term therapy effectiveness, …
- Which governance principles have been successfully used?
- What are the barriers and opportunities within these governance principles that affect scaling-up and/or collaborating with other initiatives?
- Legal and ethical restrictions:
- How do we currently handle with ethical and legal restrictions?
- How do these restrictions affect collaborative research and data handling?