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The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event

Paola Zaratin, Sara Samadzadeh, Meral Seferoğlu, Vito Ricigliano, Jonadab dos Santos Silva, Abdulkadir Tunc, Giampaolo Brichetto, Timothy Coetzee, Anne Helme, Usman Khan, Robert McBurney, Guy Peryer, Helga Weiland, Peer Baneke, Mario Alberto Battaglia, Valerie Block, Luca Capezzuto, Loïc Carment, Paolo Angelo Cortesi, Gary Cutter, Letizia Leocani, Hans-Peter Hartung, Jan Hillert, Jeremy Hobart, Kaisa Immonen, Paul Kamudoni, Rod Middleton Orcid Logo, Patricia Moghames, Xavier Montalban, Liesbet Peeters, Maria Pia Sormani, Susanna van Tonder, Angela White, Giancarlo Comi, Patrick Vermersch

Frontiers in Neurology, Volume: 15

Swansea University Author: Rod Middleton Orcid Logo

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DOI (Published version): 10.3389/fneur.2024.1407257

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Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on...

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Published in: Frontiers in Neurology
ISSN: 1664-2295
Published: Frontiers Media SA
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URI: https://cronfa.swan.ac.uk/Record/cronfa68036
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The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term “patient” refers to the people with the disease (aka People with Multiple Sclerosis – pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. 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spelling v2 68036 2024-10-22 The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event 005518f819ef1a2a13fdf438529bdfcd 0000-0002-2130-4420 Rod Middleton Rod Middleton true false 2024-10-22 MEDS Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term “patient” refers to the people with the disease (aka People with Multiple Sclerosis – pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. Looking forward, the initiative is poised to continue enhancing global surveys, rethinking to the relevant statistical approaches in clinical trials, and cultivating a unified stance among ‘industry’, regulatory bodies and health policy making regarding the application of PROs in MS healthcare strategies. Journal Article Frontiers in Neurology 15 Frontiers Media SA 1664-2295 0 0 0 0001-01-01 10.3389/fneur.2024.1407257 http://dx.doi.org/10.3389/fneur.2024.1407257 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University 2024-10-22T13:19:17.0417323 2024-10-22T13:16:59.4131963 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Paola Zaratin 1 Sara Samadzadeh 2 Meral Seferoğlu 3 Vito Ricigliano 4 Jonadab dos Santos Silva 5 Abdulkadir Tunc 6 Giampaolo Brichetto 7 Timothy Coetzee 8 Anne Helme 9 Usman Khan 10 Robert McBurney 11 Guy Peryer 12 Helga Weiland 13 Peer Baneke 14 Mario Alberto Battaglia 15 Valerie Block 16 Luca Capezzuto 17 Loïc Carment 18 Paolo Angelo Cortesi 19 Gary Cutter 20 Letizia Leocani 21 Hans-Peter Hartung 22 Jan Hillert 23 Jeremy Hobart 24 Kaisa Immonen 25 Paul Kamudoni 26 Rod Middleton 0000-0002-2130-4420 27 Patricia Moghames 28 Xavier Montalban 29 Liesbet Peeters 30 Maria Pia Sormani 31 Susanna van Tonder 32 Angela White 33 Giancarlo Comi 34 Patrick Vermersch 35
title The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
spellingShingle The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
Rod Middleton
title_short The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
title_full The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
title_fullStr The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
title_full_unstemmed The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
title_sort The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event
author_id_str_mv 005518f819ef1a2a13fdf438529bdfcd
author_id_fullname_str_mv 005518f819ef1a2a13fdf438529bdfcd_***_Rod Middleton
author Rod Middleton
author2 Paola Zaratin
Sara Samadzadeh
Meral Seferoğlu
Vito Ricigliano
Jonadab dos Santos Silva
Abdulkadir Tunc
Giampaolo Brichetto
Timothy Coetzee
Anne Helme
Usman Khan
Robert McBurney
Guy Peryer
Helga Weiland
Peer Baneke
Mario Alberto Battaglia
Valerie Block
Luca Capezzuto
Loïc Carment
Paolo Angelo Cortesi
Gary Cutter
Letizia Leocani
Hans-Peter Hartung
Jan Hillert
Jeremy Hobart
Kaisa Immonen
Paul Kamudoni
Rod Middleton
Patricia Moghames
Xavier Montalban
Liesbet Peeters
Maria Pia Sormani
Susanna van Tonder
Angela White
Giancarlo Comi
Patrick Vermersch
format Journal article
container_title Frontiers in Neurology
container_volume 15
institution Swansea University
issn 1664-2295
doi_str_mv 10.3389/fneur.2024.1407257
publisher Frontiers Media SA
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
url http://dx.doi.org/10.3389/fneur.2024.1407257
document_store_str 0
active_str 0
description Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term “patient” refers to the people with the disease (aka People with Multiple Sclerosis – pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. Looking forward, the initiative is poised to continue enhancing global surveys, rethinking to the relevant statistical approaches in clinical trials, and cultivating a unified stance among ‘industry’, regulatory bodies and health policy making regarding the application of PROs in MS healthcare strategies.
published_date 0001-01-01T13:19:16Z
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