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Title: | The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care - updates at the 2023 plenary event | Authors: | Zaratin, Paola Samadzadeh, Sara Seferoglu, Meral Ricigliano, Vito Silva, Jonadab dos Santos Tunc, Abdulkadir Brichetto, Giampaolo Coetzee, Timothy Helme, Anne Khan, Usman McBurney, Robert Peryer, Guy Weiland, Helga Baneke, Peer Battaglia, Mario Alberto Block, Valerie Capezzuto, Luca Carment, Loic Cortesi, Paolo Angelo Cutter, Gary Leocani, Letizia Hartung, Hans-Peter Hillert, Jan Hobart, Jeremy Immonen, Kaisa Kamudoni, Paul Middleton, Rod Moghames, Patricia Montalban, Xavier PEETERS, Liesbet Sormani, Maria Pia van Tonder, Susanna White, Angela Comi, Giancarlo Vermersch, Patrick |
Issue Date: | 2024 | Publisher: | FRONTIERS MEDIA SA | Source: | Frontiers in neurology, 15 (Art N° 1407257) | Abstract: | 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. | Notes: | Zaratin, P (corresponding author), Italian Multiple Sclerosis Fdn, Res Dept, Genoa, Italy. paola.zaratin@aism.it |
Keywords: | multiple sclerosis progression; patient reported outcomes; patient;engagement; personalized medicine; digital health | Document URI: | http://hdl.handle.net/1942/43448 | ISSN: | 1664-2295 | e-ISSN: | 1664-2295 | DOI: | 10.3389/fneur.2024.1407257 | ISI #: | 001262587900001 | Rights: | 2024 Zaratin, Samadzadeh, Seferoğlu, Ricigliano, dos Santos Silva, Tunc, Brichetto, Coetzee, Helme, Khan, McBurney, Peryer, Weiland, Baneke, Battaglia, Block, Capezzuto, Carment, Cortesi, Cutter, Leocani, Hartung, Hillert, Hobart, Immonen, Kamudoni, Middleton, Moghames, Montalban, Peeters, Sormani, van Tonder, White, Comi and Vermersch. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms. Open access | Category: | A1 | Type: | Journal Contribution |
Appears in Collections: | Research publications |
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