MS Data Alliance
The MS Data Alliance (MSDA) is a multi-stakeholder collaboration working to accelerate research insights for innovative care and treatment for people with MS.
The MSDA believes data can transform the care of people with MS.
It envisions a patient-centred learning health system in which all stakeholders contribute and use big data to co-create the innovations needed to advance the timely treatment and care of people with MS.
The MS Data Alliance joins patient (representatives), data custodians, data science experts, clinicians, (MS) umbrella organisations, industry and regulatory decision makers.
To date, stakeholders from over 30 countries have already shown interest in the initiative and the MSDA community is expanding rapidly.
Why join the MS Data Alliance?
The fulﬁllment of MSDA strategic objectives is beneﬁcial for researchers, health technology assessment bodies, people with MS/patient societies, registry custodians, market authorisation holder/applicants and clinicians.
Increase data quality to support:
- patient-centred decision making by regulators
- the development of decision support systems for diagnosis, prognosis and treatment
- drug safety and effectiveness research
- relative drug assessment
Reduce costs and time:
- to perform post-authorisation studies by using existing, quality-assured data
- to find, access and analyse big datasets for research purposes
Promote and enable multi-stakeholder collaborations:
- between data custodians and marketing applicant holders/applicants
- between data custodians and data science experts
- between patient representatives and regulatory decision-makers
- help desk services to tackle legal, ethical and technical challenges
- implementation strategies of (EMA) guidelines for standardised, quality-assured (minimal) datasets
- education and training in and access to real-world evidence data
Strategic objectives MSDA 2019 - 2020
MSDA aims to realize its 2019 – 2021 strategic objectives through the MSDA Toolbox and the MSDA Academy.
- Enabling better discovery and access to real world MS data.
- Raising awareness about the importance of research using real world MS data
- Promoting trustworthy and transparent practices in the way real world MS data is used.
ECF hosted the first MSDA Stakeholder Engagement Meeting on Wednesday 20 November 2019 in Baveno, Italy, in the margin of the 27th Annual Meeting.
The objective of the meeting, jointly organized by Hasselt University and EMPS (European MS Platform) is:
- to inform all stakeholders of the project outline, partners & strategy
- inform about the value of data from registries and real world data cohorts
- motivate data sharing
- discuss the benefits, challenges, opportunities and potential involvement