Frontiers in Neurology (Jun 2024)

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,
  • Sara Samadzadeh,
  • Sara Samadzadeh,
  • Meral Seferoğlu,
  • Vito Ricigliano,
  • Vito Ricigliano,
  • Jonadab dos Santos Silva,
  • 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,
  • Letizia Leocani,
  • Hans-Peter Hartung,
  • Hans-Peter Hartung,
  • Hans-Peter Hartung,
  • 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,
  • Susanna van Tonder,
  • Angela White,
  • Giancarlo Comi,
  • Patrick Vermersch

DOI
https://doi.org/10.3389/fneur.2024.1407257
Journal volume & issue
Vol. 15

Abstract

Read online

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.

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