European collaborative project
The Multiple Sclerosis Data Alliance (MSDA) is a global multi-stakeholder collaboration that was launched in 2019. It is working to accelerate research insights for innovative care and treatments for people with Multiple Sclerosis (MS).
Scaling-up real-world MS data is necessary to transform the care of people with MS and MSDA envisions a patient-centric data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.
The MSDA Toolbox aims to reduce the time needed to find and assess data registries and cohorts, building a data source catalogue and tools that can help a potential research user to understand the kind of data that is inside any data source before formalising a research data access request.
The MSDA Academy focuses on awareness raising, community building and education, providing education to the MS professional, research and patient communities on topics relating to good practices in the use and sharing of data.
We help shape the MSDA Academy workshops and the information governance approach
i~HD is a partner in this consortium, which is being funded mainly by pharma industry sponsorship. We lead a work package on MSDA Academy workshops, and lead work on information governance (including GDPR compliance, and data sharing agreements).