Research and Publications
Artificial intelligence and science of patient input: a perspective from people with multiple sclerosis
Anne Helme, Dipak Kalra, Giampaolo Brichetto, Guy Peryer, Patrick Vermersch, Helga Weiland, Angela White and Paola Zaratin
Published: 17 February 2025
Abstract
Artificial intelligence (AI) can play a vital role in achieving a shift towards predictive, preventive, and personalized medicine, provided we are guided by the science with and of patient input. Patient-reported outcome measures (PROMs) represent a unique opportunity to capture experiential knowledge from people living with health conditions and make it scientifically relevant for all other stakeholders.
Patient‑Generated Data as Indicators of Impact of Multidisciplinary and Multi‑stakeholder Health Care Systems, in the Age of Personalised Medicine
Paola Zaratin, Per Soelberg Sørensen, Óscar Fernández and Giancarlo Comi
Published: 12 February 2025
Abstract
Using the case study of the Multiple Sclerosis Care Unit Initiative launched by the European Charcot Foundation, we discuss the need to evaluate the impact of multidisciplinary and multi-stakeholder healthcare systems on patient-reported experience and outcomes for the pro- gramming and monitoring of brain and neuro-degenerative diseases in Europe and beyond.
We need to engage representative patients’ community rather than ‘expert patients’ to increase impact of research in the era of personalized medicine – Commentary
Paola Zaratin
Published: 11 February 2025
Abstract
As patient-advocacy representative, with experience in neuroscience research in different sectors (academia, pharma, and a patient organization), I have had the privilege to face the challenge of maximizing the impact of patients’ engagement in brain health research from different perspectives.
A digital version of the nine-hole peg test: Speed may be a more reliable measure of upper-limb disability than completion time in patients with multiple sclerosis
Xiaotong Jiang, Marisa McGinley, Joshua Johnston, Jay Alberts, Robert Bermel, Daniel Ontaneda, Robert T Naismith, Robert Hyde, Nick Levitt, Johan van Beek, Zhaonan Sun, Nolan Campbell and Christian Barro
Published: 12 October 2024
Abstract
Background: A digital adaptation of the nine-hole peg test (9HPT) was developed with the potential to provide novel disability features for patients with multiple sclerosis (PwMS).
Objectives: The objectives were to evaluate the 9HPT features based on reliability, prognosis, and discrimination between treatment groups.
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 Hiller, Jeremy Hobart, Kaisa Immonen, Paul Kamudoni, Rod Middleton, Patricia Moghames, Xavier Montalban, Liesbet Peeters, Maria Pia Sormani, Susanna van Tonder, Angela White, Giancarlo Comi and Patrick Vermersch on behalf of the PROMS Initiative Scientific Committee and Working Groups
Published: 20 June 2024
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.