Global PROMS Initiative

⭐ PROMS: Recent Developments and Future Perspectives We are excited to share the latest developments on Patient Reported Outcomes for Multiple Sclerosis (PROMS) presented by patrick vermersch, co-chair of our Scientific Steering Committee, at the Ninth Middle East and North Africa Committee for Treatment and Research in Multiple Sclerosis MENACTRIMS Congress held on November 2nd, 2024, in Jeddah, Saudi Arabia. Take-home messages and the future path of the PROMS initiative: ✅ PROMS survey designed with and for people with multiple sclerosis (PwMS), involving 5,000 patients globally: identification of clusters for personalized use of PROs. ✅ In-depth analysis of the potential of existing PROMs: suggestions for a shortlist of PROMs that will allow "barcoding" of PwMS clusters. ▶️ Analysis of PROMs in existing registries and implementation of PROMs. ▶️ Analysis of existing digital tools (passive and active PRO monitoring) in the PROMS_MSDA catalog. ✅ Dissemination of the impact of PROMs: considering the inclusion of PROMs in clinical trials and routine clinical practice. ✅ PROMs to influence healthcare policy in MS management. Do you want to know more about "Digital 'Science of PwMS Input' in the Era of Personalized Medicine"? ⭐ Join us for the 2024 PROMS Plenary Event on November 20th in Baveno! Register now and help shape the future of MS care and neurological research. 👉 https://lnkd.in/ewhQZF4t

🌟 𝐉𝐨𝐢𝐧 𝐮𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝟐𝟎𝟐𝟒 𝐏𝐑𝐎𝐌𝐒 𝐏𝐥𝐞𝐧𝐚𝐫𝐲 𝐄𝐯𝐞𝐧𝐭 𝐨𝐧 𝐍𝐨𝐯𝐞𝐦𝐛𝐞𝐫 𝟐𝟎𝐭𝐡 𝐢𝐧 𝐁𝐚𝐯𝐞𝐧𝐨! Discover how Digitalization could transform Multiple Sclerosis research and care towards the use of Patient Generated Health Data (PGHD) in the era of personalized medicine. 🧠 𝐌𝐚𝐢𝐧 𝐓𝐡𝐞𝐦𝐞: This year's plenary session, titled "Digital 'Science of PwMS Input' in the Era of Personalized Medicine", will delve into how digital technologies can enhance the use of Patient-Reported Outcome Measures (PROMs) in Multiple Sclerosis research and care, focusing on the longitudinal assessment of functional domains and their interdependencies.   🎯 𝐄𝐯𝐞𝐧𝐭 𝐆𝐨𝐚𝐥𝐬: Redefining the state-of-the-art of PROMs building on science of patient input and by exploring also the experience of other neurological disorders as per EU collaborative efforts Utilizing digital tools for both passive and active phenotyping of PwMS dominant functional domains and interdependencies Evaluating the role of digital phenotyping in capturing real-world data and its influence on patient outcomes Strategizing the future integration of PGHD within clinical research and care, leveraging digital approaches for optimal impact.    🔹 𝐖𝐡𝐨 𝐖𝐢𝐥𝐥 𝐁𝐞 𝐓𝐡𝐞𝐫𝐞:  The sessions will bring together diverse perspectives from people living with MS, researchers, healthcare professionals, industry, regulators, and policy makers. The discussions will address critical questions regarding existing needs, barriers, and the successes in applying digital phenotyping to PROMs. 📅 𝐄𝐯𝐞𝐧𝐭 𝐃𝐞𝐭𝐚𝐢𝐥𝐬: Hosted as a satellite session during the 32nd Annual Meeting of the European Charcot Foundation An immersive five-hour program There is still time to register and participate. Join as an 'Online PROMS Participant' with free online streaming access! 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰 𝐚𝐧𝐝 𝐡𝐞𝐥𝐩 𝐬𝐡𝐚𝐩𝐞 𝐭𝐡𝐞 𝐟𝐮𝐭𝐮𝐫𝐞 𝐨𝐟 𝐌𝐒 𝐚𝐧𝐝 𝐧𝐞𝐮𝐫𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐜𝐚𝐫𝐞 𝐚𝐧𝐝 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡! 👉 Link to register: https://lnkd.in/ewhQZF4t. Do not miss this unique opportunity to influence the future trajectory of MS and other neurological disorders care and research. #PatientEngagement #PROMs #LivingWithMS #PGHDinNeurology #DigitalHealth #PersonalizedMedicine #Neuroscience 

🌟 We are pleased to announce the participation of PROMS (Paola Zaratin Paolo Angelo Cortesi Lorenzo G Mantovani Mario Alberto Battaglia Giancarlo Comi) at the 16th National Società Italiana di leadership e Management in Medicina - SIMM (Italian Society of Leadership and Management in Medicine), held in Rome on October 3rd and 4th, 2024. 🔑 In the presentation titled “A New Model for Managing Multiple Sclerosis: The Crucial Role of Patient-Generated Health Data – Towards Personalized Medicine,” Paola Zaratin highlighted the importance of a multidisciplinary and personalized approach in the treatment and care of people living with MS. The integration of Patient-Generated Health Data, which includes Patient-Reported Outcome Measures (PROMs), Patient-Reported Experience Measures (PREMs), and Patient Preference Information (PPI), is crucial for improving the quality of care and creating personalized care pathways for people living with MS. The PROMS Initiative’s achievements so far are providing important insights to promote this paradigm shift. 🏥 Reorganizing Public Health SIMM is advocating for a significant shift, moving from a unitary approach to the health system (“SIMMetrie”) towards adopting a new model (“aSIMMetrie”). This transformation aims to connect various professionals, promoting the reorganization of public health, integrating competencies, and enhancing managerial training. It’s essential to anticipate future needs and actively engage politicians! ✨ Towards Integrated Care These themes align perfectly with the innovative approach of the MS care unit (European Charcot Foundation) presented by Paola Zaratin, using patient-generated data as indicators of the impact of care towards a renewed value of health and humanism. #MultipleSclerosis #PersonalizedMedicine #PatientGeneratedData #HealthManagement #SIMM2024 #FISM

🌍 Patient Reported Outcomes and Perspectives: A vital topic for the future of multiple sclerosis care. Yesterday’s impactful session at ECTRIMS 2024, chaired by Paola Zaratin and Per Soelberg Sørensen, highlighted how Patient Reported Outcomes (PROs) can transform healthcare and enhance the quality of life for patients. 💡 Among the many insightful presentations, Vasilis-Spyridon Tseriotis shared the First results of the PROMS Global multi-stakeholder eHealth Tools Landscaping exercise, illustrating key advancements and future opportunities in digital health tools to foster patient-centered care. 💡 Other insightful speeches highlighted the utility and relevance of PROMs in monitoring disease progression over time, such as the promising results presented by Evy Reinders from CEMCAT (Centre d'Esclerosi Múltiple de Catalunya). This supports the efforts of the PROMS Initiative to enable continuous monitoring via eHealth tools   Key Highlights: 👨 👩 The shift towards patient-centered healthcare, especially for chronic conditions like Multiple Sclerosis (MS), emphasizes the importance of Patient-Reported Outcomes (PROs) and eHealth tools; 📲 A living catalogue of eHealth tools was developed to support the use of PROs in MS management, hosted by the MS Data Alliance; 🏃♂️ 🏃♀️ 16 eHealth tools were reviewed, highlighting innovations in remote monitoring, independence for patients, and the inclusion of domains such as movement, cognition, vision, and more; 📊 Ensuring data privacy and cybersecurity remains a top priority, with many tools employing encryption and strict access controls. The session highlighted the need for continuous updates, stakeholder engagement, and the development of broader, standardized tools to enhance patient-centered care. A huge thank you to all the speakers and participants for making this session a success! Let’s continue to collaborate and ensure patients remain at the heart of healthcare innovation. #ECTRIMS2024 #eHealth #PatientReportedOutcomes #MultipleSclerosis #DigitalHealth #HealthcareInnovation

📢 Are you attending ECTRIMS 2024, the most prestigious event in the field of Multiple Sclerosis?   We are proud to share our latest findings from the Global PROMS Initiative: our ePoster titled “𝗙𝗿𝗲𝗾𝘂𝗲𝗻𝗰𝘆 𝗮𝗻𝗱 𝗶𝗺𝗽𝗮𝗰𝘁 𝗼𝗳 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲𝗱 𝗯𝘆 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗠𝗦” reveals crucial insights gathered through our global survey, which involved over 5,000 participants from 69 countries. This comprehensive survey offers a unique perspective on how various symptoms—such as stress, and cognitive difficulties—impact people with MS on a daily basis.   Within the ePoster, you’ll also find a QR code providing access to the detailed methodology behind the survey. Additionally, you can consult prevalence and impact data for the Relapsing-Remitting (RR) and Secondary Progressive (SP) groups, offering a deeper understanding of symptom patterns in different MS populations.   💡 We will be presenting the ePoster live during the 𝗣𝗼𝘀𝘁𝗲𝗿 𝗣𝗿𝗲𝘀𝗲𝗻𝘁𝗮𝘁𝗶𝗼𝗻 𝗦𝗲𝘀𝘀𝗶𝗼𝗻 𝟮 𝗮𝘁 𝘁𝗵𝗲 𝗣𝗮𝗽𝗲𝗿 𝗣𝗼𝘀𝘁𝗲𝗿 𝗔𝗿𝗲𝗮, 𝗥𝗼𝗼𝗺 𝗗𝟯, 𝘁𝗼𝗱𝗮𝘆 𝗳𝗿𝗼𝗺 𝟭𝟲:𝟰𝟱 𝘁𝗼 𝟭𝟴:𝟰𝟱 𝗖𝗘𝗦𝗧. Do not miss it!   You can also download the full PDF here: https://lnkd.in/dma8yuhU   Let’s continue working together to advance patient-centered approaches in MS research and care.   #ECTRIMS2024 #PROMSInitiative #MultipleSclerosis #PatientReportedOutcomes #HealthcareInnovation

📑 We are proud to be mentioned by VITA — a media company specializing in non-profit, sustainability, and responsible behavior — in their article on the importance of incorporating the patients’ voice in research and clinical practice.   📊 Over the past few years, significant strides have been made in recognizing the vital role that patient-reported outcomes (PROs) play in healthcare. By integrating these insights, we can better understand how diseases impact patients’ daily lives and tailor treatments accordingly. The data patients provide can help shape more patient-centered healthcare, improving both research outcomes and clinical practices.   𝗪𝗲 𝗮𝗿𝗲 𝗲𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗹𝘆 𝗴𝗿𝗮𝘁𝗲𝗳𝘂𝗹 𝘁𝗼 𝗩𝗶𝘁𝗮 𝗳𝗼𝗿 𝘀𝗽𝗼𝘁𝗹𝗶𝗴𝗵𝘁𝗶𝗻𝗴 𝘁𝗵𝗲 𝗣𝗥𝗢𝗠𝗦 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲, a global, multi-stakeholder effort dedicated to promoting this shift towards a healthcare system where the 𝗽𝗮𝘁𝗶𝗲𝗻𝘁’𝘀 𝘃𝗼𝗶𝗰𝗲 𝗶𝘀 𝗰𝗲𝗻𝘁𝗿𝗮𝗹 𝘁𝗼 𝗱𝗲𝗰𝗶𝘀𝗶𝗼𝗻-𝗺𝗮𝗸𝗶𝗻𝗴.   Read the full article here ➡ https://lnkd.in/dFAtd5J5 [Italian only].   #MS #PatientEngagement #HealthcareInnovation #PatientVoice #PROs

📢 𝗝𝗼𝗶𝗻 𝘂𝘀 𝗮𝘁 𝗘𝗖𝗧𝗥𝗜𝗠𝗦 𝟮𝟬𝟮𝟰! We are excited to announce that PROMS will be present at the most important event for the MS community: ECTRIMS 2024. Come meet us at Booth ECF, also at the NPO Village, C29-C31, and join our two important presentations: 1️⃣ 𝗣𝗼𝘀𝘁𝗲𝗿 𝗣𝗿𝗲𝘀𝗲𝗻𝘁𝗮𝘁𝗶𝗼𝗻 Presenter: Giampaolo Brichetto Poster Number: P891 𝗔𝗯𝘀𝘁𝗿𝗮𝗰𝘁 𝗧𝗶𝘁𝗹𝗲: 𝗙𝗿𝗲𝗾𝘂𝗲𝗻𝗰𝘆 𝗮𝗻𝗱 𝗶𝗺𝗽𝗮𝗰𝘁 𝗼𝗳 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲𝗱 𝗯𝘆 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗠𝗦 – 𝗿𝗲𝘀𝘂𝗹𝘁𝘀 𝗳𝗿𝗼𝗺 𝘁𝗵𝗲 𝗴𝗹𝗼𝗯𝗮𝗹 𝗣𝗥𝗢𝗠𝗦 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲 𝘀𝘂𝗿𝘃𝗲𝘆 📝 Authors: Giampaolo Brichetto, Anne Helme, Luca Ghirotto, Giusy Iorio, Laura Belscott, Guy Peryer, Ainhoa Ruiz del Agua, PhD, Susanna V. Tonder, Helga Weiland, Angela White, patrick vermersch, Paola Zaratin 2️⃣ 𝗢𝗿𝗮𝗹 𝗣𝗿𝗲𝘀𝗲𝗻𝘁𝗮𝘁𝗶𝗼𝗻 Presenter: Vasilis-Spyridon Tseriotis Presentation ID: O082 𝗦𝗲𝘀𝘀𝗶𝗼𝗻: 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗮𝗻𝗱 𝗽𝗲𝗿𝘀𝗽𝗲𝗰𝘁𝗶𝘃𝗲𝘀 𝗔𝗯𝘀𝘁𝗿𝗮𝗰𝘁 𝗧𝗶𝘁𝗹𝗲: 𝗙𝗶𝗿𝘀𝘁 𝗿𝗲𝘀𝘂𝗹𝘁𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗣𝗥𝗢𝗠𝗦 𝗚𝗹𝗼𝗯𝗮𝗹 𝗺𝘂𝗹𝘁𝗶-𝘀𝘁𝗮𝗸𝗲𝗵𝗼𝗹𝗱𝗲𝗿 𝗲𝗛𝗲𝗮𝗹𝘁𝗵 𝗧𝗼𝗼𝗹𝘀 𝗟𝗮𝗻𝗱𝘀𝗰𝗮𝗽𝗶𝗻𝗴 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 📝Authors: Vasilis-Spyridon Tseriotis, Liesbet M. PEETERS, Lotte Geys, Marcus Dsouza, Johan van Beek, Paola Zaratin, Robert Hyde, Letizia Leocani 𝗗𝗼𝗻’𝘁 𝗺𝗶𝘀𝘀 𝘁𝗵𝗲𝘀𝗲 𝗼𝗽𝗽𝗼𝗿𝘁𝘂𝗻𝗶𝘁𝗶𝗲𝘀 𝘁𝗼 𝗹𝗲𝗮𝗿𝗻 𝗮𝗯𝗼𝘂𝘁 𝘁𝗵𝗲 𝗹𝗮𝘁𝗲𝘀𝘁 𝗮𝗱𝘃𝗮𝗻𝗰𝗲𝗺𝗲𝗻𝘁𝘀 𝗶𝗻 𝗠𝗦 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗮𝗻𝗱 𝗵𝗼𝘄 𝗣𝗥𝗢𝗠𝗦 𝗶𝘀 𝗱𝗿𝗶𝘃𝗶𝗻𝗴 𝗰𝗵𝗮𝗻𝗴𝗲! #ECTRIMS2024 #MSResearch #PROMS #PatientReportedOutcomes #MSCommunity

𝗧𝗵𝗲 𝗣𝗥𝗢𝗠𝗦 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲 𝗶𝘀 𝗯𝗮𝗰𝗸 𝘄𝗶𝘁𝗵 𝗿𝗲𝗻𝗲𝘄𝗲𝗱 𝗳𝗼𝗰𝘂𝘀 𝗮𝗻𝗱 𝗲𝗻𝗲𝗿𝗴𝘆! After a brief summer break, we are excited to announce that the PROMS Initiative is resuming its activities with renewed energy and a forward-looking focus on the upcoming major event: ECTRIMS (18-20 September 2024, Copenhagen | Denmark)   We can’t wait to share some significant updates regarding the results of the 𝗚𝗹𝗼𝗯𝗮𝗹 𝗣𝗥𝗢𝗠𝗦 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲 𝗦𝘂𝗿𝘃𝗲𝘆, as already mentioned in the recent interview with Paola Zaratin, Co-Chair SSC (https://lnkd.in/efvxr_bB). Additionally, we will be presenting the initial findings of the 𝗣𝗥𝗢𝗠𝗦 𝗚𝗹𝗼𝗯𝗮𝗹 𝗠𝘂𝗹𝘁𝗶-𝗦𝘁𝗮𝗸𝗲𝗵𝗼𝗹𝗱𝗲𝗿 𝗲𝗛𝗲𝗮𝗹𝘁𝗵 𝗧𝗼𝗼𝗹𝘀 𝗟𝗮𝗻𝗱𝘀𝗰𝗮𝗽𝗶𝗻𝗴 𝗘𝘅𝗲𝗿𝗰𝗶𝘀𝗲, a project that aims to enhance digital tools supporting patients globally.   🔍 The recent 𝗙𝗿𝗼𝗻𝘁𝗶𝗲𝗿𝘀 𝗶𝗻 𝗡𝗲𝘂𝗿𝗼𝗹𝗼𝗴𝘆 𝗿𝗲𝘃𝗶𝗲𝘄 (https://lnkd.in/e9-SPXrZ) delves into how PROs can be leveraged to maximize benefits in research and clinical practice, emphasizing personalization and patient-centered approaches.   Stay tuned for more updates and get ready to explore new frontiers in research with us!

We are delighted to announce that we participated in the 𝗠𝘂𝗹𝘁𝗶𝗽𝗹𝗲 𝗦𝗰𝗹𝗲𝗿𝗼𝘀𝗶𝘀 𝗮𝗻𝗱 𝗡𝗠𝗢𝗦𝗗 𝗦𝘆𝗺𝗽𝗼𝘀𝗶𝘂𝗺: 𝗡𝗲𝘄 𝗖𝗵𝗮𝗹𝗹𝗲𝗻𝗴𝗲𝘀 𝗶𝗻 𝗗𝗲𝗮𝗹𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗠𝗦 𝗮𝗻𝗱 𝗡𝗠𝗢𝗦𝗗 𝗥𝗲𝗮𝗹-𝗪𝗼𝗿𝗹𝗱 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀, which was held at Universidad del Desarrollo in Chile on August 12th. 🔹 𝗢𝗯𝗷𝗲𝗰𝘁𝗶𝘃𝗲: The symposium aimed to provide an educational and up-to-date perspective on the latest advancements in therapeutics and diagnostics related to Multiple Sclerosis (MS) and Neuromyelitis Optica Spectrum Disorder (NMOSD). 🔹 𝗣𝗥𝗢𝗠𝗦 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲 𝗛𝗶𝗴𝗵𝗹𝗶𝗴𝗵𝘁𝘀: During the session, we focused on the following key areas: • The growing role of PROMs: Making science with patient input relevant for all stakeholders via the MULTI-ACT model. • The growing role of PROMs: ‘Deep phenotyping’ the experiential knowledge of people with MS. • The growing role of e-PROMs: Measuring changes in PwMS experiential knowledge over time. • The growing role of PROMs and PPI: Measuring the impact of the holistic care model—MS Care Unit—on patient-reported dimensions, and thereby on healthcare value (outcomes/cost). We are grateful for the opportunity to have contributed to this important dialogue and look forward to continuing to share insights and collaborate with our esteemed colleagues. 🔗 𝗦𝘁𝗮𝘆 𝗖𝗼𝗻𝗻𝗲𝗰𝘁𝗲𝗱: Follow us for more updates and insights from the PROMS Initiative ➡ https://lnkd.in/dAEVXfVg #PROMSInitiative #MultipleSclerosis #NMOSD #PatientReportedOutcomes

📊 Rethinking statistics by embracing representativeness over averages, personalizing disease markers, and capturing Patient Reported Outcomes (PRO) with a focus on interdependent functional domains—these are the key points from Paola Zaratin interview, co-chair of PROMS SSC.   🌍 The global survey, involving over 5,000 people with multiple sclerosis, highlighted the need for a more personalized and representative approach in research and care, centering on real patient experiences.   🔍 The recent Frontiers in Neurology review (https://lnkd.in/e9-SPXrZ) delves into how PROs can be leveraged to maximize benefits in research and clinical practice, emphasizing personalization and patient-centered approaches.   Discover PROMS achievements five years after its launch: ➡ https://lnkd.in/efvxr_bB (Italian only)   #MultipleSclerosis #ClinicalResearch #PatientCentricity #HealthcareInnovation