PMID- 35367873 OWN - NLM STAT- MEDLINE DCOM- 20220608 LR - 20220608 IS - 2211-0356 (Electronic) IS - 2211-0348 (Linking) VI - 61 DP - 2022 May TI - The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions. PG - 103757 LID - S2211-0348(22)00272-3 [pii] LID - 10.1016/j.msard.2022.103757 [doi] AB - 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. CI - Copyright (c) 2022 Elsevier B.V. All rights reserved. FAU - Zaratin, Paola AU - Zaratin P AD - Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy. Electronic address: paola.zaratin@aism.it. FAU - Vermersch, Patrick AU - Vermersch P AD - Univ. Lille, Inserm U1172 LilNCog, CHU Lille, FHU Precise, Lille, France. FAU - Amato, Maria Pia AU - Amato MP AD - Department of NEUROFARBA, University of Florence, IRCCS Fondazione Don Carlo Gnocchi, Florence, Italy. FAU - Brichetto, Giampaolo AU - Brichetto G AD - Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy. FAU - Coetzee, Timothy AU - Coetzee T AD - National Multiple Sclerosis Society, New York, United States of America. FAU - Cutter, Gary AU - Cutter G AD - Department of Biostatistics, School of Public Health, The University of Alabama at Birmingham, Birmingham, United States of America. FAU - Edan, Gilles AU - Edan G AD - Neurology Department, University Hospital of Rennes, Rennes, France. FAU - Giovannoni, Gavin AU - Giovannoni G AD - Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK. FAU - Gray, Emma AU - Gray E AD - Multiple Sclerosis Society, London, UK. FAU - Hartung, Hans Peter AU - Hartung HP AD - Department of Neurology, UKD, Medical Faculty, Heinrich Heine Universitat, Dusseldorf, 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. FAU - Hobart, Jeremy AU - Hobart J AD - Plymouth University Peninsula Schools of Medicine and Dentistry Devon, UK. FAU - Helme, Anne AU - Helme A AD - Multiple Sclerosis International Federation, London, UK. FAU - Hyde, Robert AU - Hyde R AD - Biogen International GmbH, Switzerland. FAU - Khan, Usman AU - Khan U AD - Institute for Healthcare Policy, KU Leuven, Belgium. FAU - Leocani, Letizia AU - Leocani L AD - Vita-Salute San Raffaele University, Milan, Italy. FAU - Mantovani, Lorenzo Giovanni AU - Mantovani LG AD - Research Centre on Public Health (CESP), University of Milan-Bicocca, Milan, Italy; IRCCS Multimedica, Sesto San Giovanni, Italy. FAU - McBurney, Robert AU - McBurney R AD - Accelerated Cure Project, Waltham, MA, United States of America. FAU - Montalban, Xavier AU - Montalban X AD - Hopital Vall d'Hebron, Universitat Autonoma de Barcelona, Barcelona, Spain. FAU - Penner, Iris-Katharina AU - Penner IK AD - Department of Neurology, Medical Faculty, Heinrich-Heine-University, Dusseldorf, Germany. FAU - Uitdehaag, Bernard M J AU - Uitdehaag BMJ AD - Department of Neurology, MS Center Amsterdam, Amsterdam University Medical Centers, Amsterdam, the Netherland. FAU - Valentine, Pamela AU - Valentine P AD - Multiple Sclerosis Society of Canada, Toronto, Canada. FAU - Weiland, Helga AU - Weiland H AD - Multiple Sclerosis South Africa, Western Cape, South African. FAU - Bertorello, Deborah AU - Bertorello D AD - Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy. FAU - Battaglia, Mario Alberto AU - Battaglia MA AD - Department of Life Science, University of Siena, Siena, Italy. FAU - Baneke, Peer AU - Baneke P AD - Multiple Sclerosis International Federation, London, UK. FAU - Comi, Giancarlo AU - Comi G AD - Vita-Salute San Raffaele University, Milan, Italy; Casa di Cura del Policlinico, Milan, Italy. CN - PROMS Initiative Working Groups LA - eng PT - Journal Article DEP - 20220323 PL - Netherlands TA - Mult Scler Relat Disord JT - Multiple sclerosis and related disorders JID - 101580247 SB - IM MH - Health Personnel MH - Humans MH - *Multiple Sclerosis/therapy MH - Patient Reported Outcome Measures OTO - NOTNLM OT - Digital Health OT - Multiple Sclerosis progression OT - Patient Reported Outcomes (PRO) OT - Patient engagement OT - Personalized care OT - Responsible Research Innovation (RRI) EDAT- 2022/04/04 06:00 MHDA- 2022/06/09 06:00 CRDT- 2022/04/03 20:30 PHST- 2022/02/09 00:00 [received] PHST- 2022/03/14 00:00 [revised] PHST- 2022/03/20 00:00 [accepted] PHST- 2022/04/04 06:00 [pubmed] PHST- 2022/06/09 06:00 [medline] PHST- 2022/04/03 20:30 [entrez] AID - S2211-0348(22)00272-3 [pii] AID - 10.1016/j.msard.2022.103757 [doi] PST - ppublish SO - Mult Scler Relat Disord. 2022 May;61:103757. doi: 10.1016/j.msard.2022.103757. Epub 2022 Mar 23.