The PROMS Initiative aims to transform healthcare research and delivery by adopting a participatory medicine approach that places patients—particularly those living with multiple sclerosis (MS)—at the center of decision-making. By integrating patients’ perspectives, preferences, and experiences into all stages of research and care, the initiative seeks to ensure that their voices meaningfully shape healthcare outcomes.

To realize this vision, PROMS emphasizes participatory governance, stakeholder collaboration, and robust systems for assessing the impact of its efforts. Through active involvement of patients and key stakeholders, including regulatory and Health Technology Assessment (HTA) agencies, the initiative works to establish a unified view on patient-reported outcomes (PROs) for MS. Ultimately, the PROMS Initiative strives to improve the quality of care and life for people with MS, strengthen patient engagement, and drive broader transformation within the healthcare system. 

Multiple Sclerosis affects everyone differently, yet our current approaches to measuring treatment effectiveness don’t always capture what matters most to people living with the condition. This pivotal event brings together leading researchers, regulatory experts, clinicians, industry partners, and people with MS to transform how we integrate Patient Reported Outcomes Measures (PROMs) into MS care and therapeutic development.

Objectives of the meeting

• Review current EMA regulatory models regarding the use of Patient Experience Data (PED) including PROMs in drug approval
• Develop Consensus on PROM Integration into phenotype classification of people with MS and new clinical descriptors of MS
• Create a roadmap for future action for MS and beyond

Highlights of the meeting

• EMA Reflection Paper on Patient Experience Data
• New MS clinical descriptors rooted in PROMs
• Bridging biological mechanisms with patient-reported outcomes
• Successful PRO development from rare neurological diseases
• Industry and regulatory perspectives on PRO integration
• Creating a consensus-driven roadmap for the future

Who should attend

• MS researchers and clinicians
• Regulatory affairs professionals
• Pharmaceutical and biotech representatives
• Patient advocacy organizations
• Healthcare policy makers
• People with MS and their advocates

The Impact of PROMs in Developing Emerging Therapies

Global PROMS Initiative data analysis workshop
Upon invitation only

Register now and be part of shaping the future of MS research and care.