On 12 September 2019, the global Patient Reported Outcome for Multiple Sclerosis (PROMS) Initiative was launched at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The multi-stakeholder PROMS Initiative is jointly led by the European Charcot Foundation (ECF) and the Multiple Sclerosis International Federation (MSIF), with the Italian Multiple Sclerosis Society (AISM) acting as the lead agency for and on behalf of the global MSIF movement. The initiative has the ambitious mission to (i) maximize the impact of science with and of patient input on the life of people affected by MS, and (ii) to represent a unified view on Patient-Reported Outcomes for MS to people affected by MS, healthcare providers, regulatory agencies and Health Technologies Assessments agencies. Equipped with an innovative participatory governance of an international and interdisciplinary network of different stakeholders, PROMS has the potential to guide future breakthroughs in MS patient-focused research and care. In this paper we present the progresses of the global PROMS Initiative and discuss the open questions that we aim to address.

Accelerated Cure Project Waltham MA United States of America

Biogen International GmbH Switzerland

Blizard Institute Barts and the London School of Medicine and Dentistry Queen Mary University of London London UK

Department of Biostatistics School of Public Health The University of Alabama at Birmingham Birmingham United States of America

Department of Life Science University of Siena Siena Italy

Department of NEUROFARBA University of Florence IRCCS Fondazione Don Carlo Gnocchi Florence Italy

Department of Neurology Medical Faculty Heinrich Heine University Dusseldorf Germany

Department of Neurology MS Center Amsterdam Amsterdam University Medical Centers Amsterdam the Netherland

Department of Neurology UKD Medical Faculty Heinrich Heine Universität Düsseldorf Germany; Brain and Mind Center University of Sydney Australia; Department of Neurology Medical University of Vienna Austria; Department of Neurology Palacky University Olomouc Czech Republic

Hopital Vall d'Hebron Universitat Autònoma de Barcelona Barcelona Spain

Institute for Healthcare Policy KU Leuven Belgium

Multiple Sclerosis International Federation London UK

Multiple Sclerosis Society London UK

Multiple Sclerosis Society of Canada Toronto Canada

Multiple Sclerosis South Africa Western Cape South African

National Multiple Sclerosis Society New York United States of America

Neurology Department University Hospital of Rennes Rennes France

Plymouth University Peninsula Schools of Medicine and Dentistry Devon UK

Research Centre on Public Health University of Milan Bicocca Milan Italy; IRCCS Multimedica Sesto San Giovanni Italy

Research Department Italian Multiple Sclerosis Foundation Via Operai 40 Genoa Italy

Univ Lille Inserm U1172 LilNCog CHU Lille FHU Precise Lille France

Vita Salute San Raffaele University Milan Italy

Vita Salute San Raffaele University Milan Italy; Casa di Cura del Policlinico Milan Italy

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