The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions

Paola Zaratin; Patrick Vermersch; Maria Pia Amato; Giampaolo Brichetto; Timothy Coetzee; Gary Cutter; Gilles Edan; Gavin Giovannoni; Emma Gray; Hans Peter Hartung; Jeremy Hobart; Anne Helme; Robert Hyde; Usman Khan; Letizia Leocani; Lorenzo Giovanni Mantovani; Robert McBurney; Xavier Montalban; Iris-Katharina Penner; Bernard M J Uitdehaag; Pamela Valentine; Helga Weiland; Deborah Bertorello; Mario Alberto Battaglia; Peer Baneke; Giancarlo Comi; PROMS Initiative Working Groups

doi:10.1016/j.msard.2022.103757

The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions

Mult Scler Relat Disord. 2022 May:61:103757. doi: 10.1016/j.msard.2022.103757. Epub 2022 Mar 23.

Authors

Paola Zaratin¹, Patrick Vermersch², Maria Pia Amato³, Giampaolo Brichetto⁴, Timothy Coetzee⁵, Gary Cutter⁶, Gilles Edan⁷, Gavin Giovannoni⁸, Emma Gray⁹, Hans Peter Hartung¹⁰, Jeremy Hobart¹¹, Anne Helme¹², Robert Hyde¹³, Usman Khan¹⁴, Letizia Leocani¹⁵, Lorenzo Giovanni Mantovani¹⁶, Robert McBurney¹⁷, Xavier Montalban¹⁸, Iris-Katharina Penner¹⁹, Bernard M J Uitdehaag²⁰, Pamela Valentine²¹, Helga Weiland²², Deborah Bertorello⁴, Mario Alberto Battaglia²³, Peer Baneke¹², Giancarlo Comi²⁴; PROMS Initiative Working Groups

Affiliations

¹ Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy. Electronic address: paola.zaratin@aism.it.
² Univ. Lille, Inserm U1172 LilNCog, CHU Lille, FHU Precise, Lille, France.
³ Department of NEUROFARBA, University of Florence, IRCCS Fondazione Don Carlo Gnocchi, Florence, Italy.
⁴ Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy.
⁵ National Multiple Sclerosis Society, New York, United States of America.
⁶ Department of Biostatistics, School of Public Health, The University of Alabama at Birmingham, Birmingham, United States of America.
⁷ Neurology Department, University Hospital of Rennes, Rennes, France.
⁸ Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.
⁹ Multiple Sclerosis Society, London, UK.
¹⁰ 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.
¹¹ Plymouth University Peninsula Schools of Medicine and Dentistry Devon, UK.
¹² Multiple Sclerosis International Federation, London, UK.
¹³ Biogen International GmbH, Switzerland.
¹⁴ Institute for Healthcare Policy, KU Leuven, Belgium.
¹⁵ Vita-Salute San Raffaele University, Milan, Italy.
¹⁶ Research Centre on Public Health (CESP), University of Milan-Bicocca, Milan, Italy; IRCCS Multimedica, Sesto San Giovanni, Italy.
¹⁷ Accelerated Cure Project, Waltham, MA, United States of America.
¹⁸ Hopital Vall d'Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain.
¹⁹ Department of Neurology, Medical Faculty, Heinrich-Heine-University, Dusseldorf, Germany.
²⁰ Department of Neurology, MS Center Amsterdam, Amsterdam University Medical Centers, Amsterdam, the Netherland.
²¹ Multiple Sclerosis Society of Canada, Toronto, Canada.
²² Multiple Sclerosis South Africa, Western Cape, South African.
²³ Department of Life Science, University of Siena, Siena, Italy.
²⁴ Vita-Salute San Raffaele University, Milan, Italy; Casa di Cura del Policlinico, Milan, Italy.

PMID: 35367873
DOI: 10.1016/j.msard.2022.103757

Abstract

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.

Keywords: Digital Health; Multiple Sclerosis progression; Patient Reported Outcomes (PRO); Patient engagement; Personalized care; Responsible Research Innovation (RRI).

MeSH terms

Health Personnel
Humans
Multiple Sclerosis* / therapy
Patient Reported Outcome Measures