Pooling real-world multiple sclerosis patient data on a European level: a true story of success

Abstract

Patient-based evidence is becoming increasingly important in budget-restricted healthcare systems as the information can help influence the direction of funds towards interventions that provide the most relevant outcomes for people living with a chronic disease. The European Multiple Sclerosis Platform (EMSP) is an umbrella organization for national multiple sclerosis (MS) patients’ associations in Europe which represents the interests of >700,000 MS patients, their families and caregivers. EMSP aims to ensure the delivery of high-quality equitable treatment for persons with MS across Europe. EMSP is involved in numerous projects and activities that encompass its vision and mission. The European Network of MS Registries project has provided proof of concept that high quality MS data from previously unconnected sources can be integrated to inform research and improve patient outcomes.