A global initiative, shaped by patients
Patient Reported Outcomes
for Multiple Sclerosis
Bringing the perspectives and experiences of people with MS into research, treatment and care.
Jointly led by European Charcot Foundation and Multiple Sclerosis International Federation; Italian MS Society, lead agency for the global MSIF movement.
PROMS Plenary Event 2026
Patient-reported outcomes in treatment development and care
The Global PROMS Initiative recommendations
11 November 2026 · 09:00–13:00 CET
Grand Hotel Dino · Baveno, Italy
The PROMS community will come together to discuss the latest developments in patient-reported outcome measures and their role in clinical practice, research and patient-centred care.
Taking place ahead of the 34th European Charcot Foundation Annual Meeting, the event is aligned with its theme, “Treatment Efficacy and Risk Management Across the Disease Course”.
Explore PROMS
People at the heart of progress
Our values
A global collaboration of people affected by MS, researchers, clinicians, industry and MS organisations, working towards outcomes that matter to patients.
Our governance
An inclusive framework that gives people affected by MS and patient organisations a meaningful role in shaping research and care.
Get involved
Connect with our community as a person affected by MS, a researcher, an organisation or a partner with an interest in patient-reported outcomes.
Our vision
Healthcare shaped by lived experience
We want patients’ perspectives, preferences and experiences to inform every stage of healthcare research and delivery.
Through participatory governance and meaningful impact assessment, PROMS seeks to improve the quality of care and outcomes for people living with MS.
Our mission
A shared voice for better outcomes
We bring together the MS community to strengthen the use of patient-reported outcomes across research, treatment and care.
By developing a shared perspective on PROs for MS, we help ensure that patients’ voices are heard by researchers, clinicians, regulatory agencies and health technology assessment bodies.
A survey co-created with patients
Your experience can help shape the future of MS care
The global PROMS survey was developed with people affected by MS and the research community to understand the outcomes that matter most to patients.
People with MS played an active role in shaping the survey, helping to connect lived experience with the development and use of patient-reported outcomes.
Patient participation
Science with and of patient input
Science with patient input
Patients and patient organisations help define how research is governed and carried out. PROMS builds on participatory approaches, including the EU MULTI-ACT framework and toolkit, to support meaningful engagement.
Science of patient input
Patient-reported outcomes and their measurement instruments offer a way to understand the impact of research, treatment and care on the outcomes that matter most to patients.
Understanding the essentials
What are PROs and PROMs?
A patient-reported outcome (PRO) is a report of a person’s health that comes directly from that person. It describes their own experience, including symptoms, daily activities and quality of life.
A patient-reported outcome measure (PROM) is a tool used to record and assess these outcomes.
These perspectives help research and care focus on what matters to people living with MS.
Our working groups
Four priorities. One shared purpose.
Connecting patient experience with research, clinical care, digital health and policy.
WG1
Research, development and validation
WG2
Clinical management
WG3
Digital health
WG4