About PROMS
Our values
A global collaboration working to make patient experience central to MS research, treatment and care.
The Patient Reported Outcomes for MS (PROMS) Initiative brings together people affected by MS, researchers, clinicians, pharmaceutical companies and MS organisations to reach consensus on standardised patient-reported outcomes.
Launched in 2019, the initiative is jointly led by MSIF and the European Charcot Foundation, with the Italian MS Society (AISM) as lead agency.
Participation at every level
PROMS brings together a global community through a governance structure that includes people affected by MS in decision-making.
The Engagement Coordination Team (ECT) ensures that lived experience informs the initiative. Its members participate in the working groups, contribute to projects and advise on the decisions of the Scientific Steering Committee. The approach draws on the EU-funded MULTI-ACT project.
Our governance connects four complementary roles:
- Executive Committee: representatives of MSIF and ECF, together with an ECT co-chair, oversee the initiative.
- Scientific Steering Committee: coordinates the scientific agenda and the work across the four priority areas.
- Working groups: bring together people affected by MS and experts in research, care, industry and policy to define and carry out the scientific work.
- Management and support teams: staff from AISM, ECF and MSIF coordinate the initiative’s day-to-day activities.
PROMS Framework and outcomes
Four interdisciplinary working groups investigate patient-reported outcomes from complementary perspectives: research and validation, clinical practice, digital health, and healthcare policy.
Their shared goal is to ensure that the experiential knowledge of people with MS is represented in the development of a core dataset for MS PROMs.
The Scientific Steering Committee and Executive Committee guide this work, supported by dedicated management, fundraising and communication teams.