PROMS Initiative
The Global Patient-Reported Outcomes for Multiple Sclerosis (PROMS) Initiative is a multi-stakeholder collaboration led by the Multiple Sclerosis International Federation (MSIF) and the European Charcot Foundation (ECF). It brings together people living with Multiple Sclerosis, clinicians, researchers, industry partners, and advocacy organisations to put the experience of people with MS at the heart of research, therapy development, clinical care, and health policy.
PROMS uses a participatory governance model with an Engagement Coordination Team (ECT) of people affected by Multiple Sclerosis, and international Working Groups focused on developing, validating, and implementing high-quality patient-reported outcomes and measures in real-world settings and clinical research.
Project Goals
- Define and harmonise a set of standardised, validated patient-reported outcomes for use across therapy development, clinical care, and policy.
- Amplify the voice of people living with Multiple Sclerosis via structured engagement and co-creation (ECT and Working Groups).
- Advance digital PRO collection to track what matters most to people with Multiple Sclerosis over time in daily life and rehabilitation.
- Support global adoption of patient-reported outcomes through guidance, dissemination, and collaboration across 60+ organisations.
Timeline & Highlights
- Initiative launched: 12 September 2019 (ECTRIMS 2019)
- Global engagement: 60+ contributors across the world with multi-stakeholder governance
- Survey milestone: Preliminary results presented at ECTRIMS 2024 with 5,218 participants from 69 countries
Definitions:
PROs (Patient-Reported Outcomes): the aspects of health, symptoms, and quality of life reported directly by people living with Multiple Sclerosis.
PROMs (Patient-Reported Outcome Measures): the questionnaires or instruments used to capture PROs in a reliable, validated way.
RiMS Participation
Working Groups & Leadership
Members of RiMS (Rehabilitation in Multiple Sclerosis) contribute to PROMS leadership and Working Groups—for example, co-leading activities focused on researching, validating, and implementing patient-reported outcomes in Multiple Sclerosis rehabilitation and daily care pathways.
PwMS Engagement & Knowledge Translation
RiMS helps connect the rehabilitation community and people living with Multiple Sclerosis to ensure the co-creation of outcomes and the translation of findings into clinical practice, education, and policy discussions across Europe.