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

Health Personnel Humans Multiple Sclerosis / therapy Patient Reported Outcome Measures
Digital Health Multiple Sclerosis progression Patient Reported Outcomes (PRO) Patient engagement Personalized care Responsible Research Innovation (RRI)

Journal

Multiple sclerosis and related disorders
ISSN: 2211-0356
Titre abrégé: Mult Scler Relat Disord
Pays: Netherlands
ID NLM: 101580247

Informations de publication

Date de publication:
May 2022
Historique:
received: 09 02 2022
revised: 14 03 2022
accepted: 20 03 2022
pubmed: 4 4 2022
medline: 9 6 2022
entrez: 3 4 2022
Statut: ppublish

Résumé

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.

Identifiants

DOI: 10.1016/j.msard.2022.103757 PMID: 35367873
pubmed: 35367873
pii: S2211-0348(22)00272-3
doi: 10.1016/j.msard.2022.103757
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

103757

Informations de copyright

Copyright © 2022 Elsevier B.V. All rights reserved.

Auteurs

Paola Zaratin (P)

Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy. Electronic address: paola.zaratin@aism.it.

Patrick Vermersch (P)

Univ. Lille, Inserm U1172 LilNCog, CHU Lille, FHU Precise, Lille, France.

Maria Pia Amato (MP)

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

Giampaolo Brichetto (G)

Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy.

Timothy Coetzee (T)

National Multiple Sclerosis Society, New York, United States of America.

Gary Cutter (G)

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

Gilles Edan (G)

Neurology Department, University Hospital of Rennes, Rennes, France.

Gavin Giovannoni (G)

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

Emma Gray (E)

Multiple Sclerosis Society, London, UK.

Hans Peter Hartung (HP)

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.

Jeremy Hobart (J)

Plymouth University Peninsula Schools of Medicine and Dentistry Devon, UK.

Anne Helme (A)

Multiple Sclerosis International Federation, London, UK.

Robert Hyde (R)

Biogen International GmbH, Switzerland.

Usman Khan (U)

Institute for Healthcare Policy, KU Leuven, Belgium.

Letizia Leocani (L)

Vita-Salute San Raffaele University, Milan, Italy.

Lorenzo Giovanni Mantovani (LG)

Research Centre on Public Health (CESP), University of Milan-Bicocca, Milan, Italy; IRCCS Multimedica, Sesto San Giovanni, Italy.

Robert McBurney (R)

Accelerated Cure Project, Waltham, MA, United States of America.

Xavier Montalban (X)

Hopital Vall d'Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain.

Iris-Katharina Penner (IK)

Department of Neurology, Medical Faculty, Heinrich-Heine-University, Dusseldorf, Germany.

Bernard M J Uitdehaag (BMJ)

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

Pamela Valentine (P)

Multiple Sclerosis Society of Canada, Toronto, Canada.

Helga Weiland (H)

Multiple Sclerosis South Africa, Western Cape, South African.

Deborah Bertorello (D)

Research Department, Italian Multiple Sclerosis Foundation, Via Operai 40, Genoa, Italy.

Mario Alberto Battaglia (MA)

Department of Life Science, University of Siena, Siena, Italy.

Peer Baneke (P)

Multiple Sclerosis International Federation, London, UK.

Giancarlo Comi (G)

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

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Classifications MeSH

questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Personnel de santé › The agenda of the global patient reported...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › The agenda of the global patient reported...
questionsmedicales.fr › Maladies du système immunitaire › Maladies auto-immunes › Maladies auto-immunes du système nerveux › Maladies démyélinisantes auto-immunes du SNC › Sclérose en plaques › The agenda of the global patient reported...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Enquêtes sur les soins de santé › Mesures des résultats rapportés par les patients › The agenda of the global patient reported...