Objectives 2019-2021

To raise awareness about the importance of research using real world MS data, by: 

  • running a motivational campaign
  • organising large scale meetings within the community and with decision makers

The MSDA Academy will lead on delivering this objective

To enable better discovery and access to real world MS data, by:

  • cataloguing and publishing descriptions of data sources that are ready to share access to their data
  • promoting the adoption of a common data model for sharing data access
  • developing a standardised data dictionary of commonly used MS data concepts
  • facilitating the mapping by Alliance data sources to this data model and standardised data dictionary
  • developing, in partnership with the IMI EHDEN project, a federated architecture and portal to support wider data access 

The MSDA Toolbox will lead on delivering this objective

To promote trustworthy and transparent practices in the way real world MS data is used, by:

  • developing and promoting the adoption of a code of practice for the reuse of data in compliance with the EU GDPR
  • developing and promoting good practices in data sharing and distributed data use 

The MSDA Academy will lead on delivering this objective