Big MS data is the future.
We envision a patient-centred learning health system in which all stakeholders contribute and use big MS data to co-create the innovations needed to advance the timely treatment and care of people with MS.
The Multiple Sclerosis Data Alliance (MSDA) is a multi-stakeholder collaboration working to accelerate research insights for innovative care and treatments for people with MS, by:
- raising awareness about the importance of research using real world MS data
- enabling better discovery and access to real world MS data
- promoting trustworthy and transparent practices in the way real world MS data is used.
- MS data is used collaboratively to generate shared research and novel treatments
- We work with patient communities and organisations to promote the value of research and the importance of MS data. To achieve this:
- We promote to our stakeholders the importance of the data needed to conduct the research identified as patient priorities
- We encourage all actors in our ecosystem to contribute and use data in transparent and trustworthy ways
- We promote the collection and use of real world data to address important knowledge needs that complement randomised clinical trials
- We respect and promote the Findable, Interoperable, Accessible, Reusable (FAIR) principles across all MS data sources
- We respect the autonomy and ownership of data sources
- The MSDA will strive to support the sustainability of the MS data, knowledge, innovation and care improvement ecosystem, and of the Alliance itself