🗣️ Calling all PwMS! 🌈 We recently launched the #PROMSSurvey, designed by patients for patients. Share your unique perspectives and experiences to help us better understand the challenges faced by people with Multiple Sclerosis. Together, we can shape a brighter future! 🌟

🌟 Your voice matters! If you are a person with MS, take part in the #PROMSSurvey and help us uncover the most impactful symptoms. By sharing your experiences, you can help developing more meaningful patient-reported outcomes (PROs) and measures. Let’s make a difference together!

Are you at #MSMilan2023 and would like to meet us? Pass by the European Charcot Foundation booth E.02 & let’s have a chat! You can also grab one of our brochures to learn more about our work towards meaningful PROs’ use in MS research & care Stay tuned for more PROMS news from ECTRIMS!

Still time to join #MSMilan2023 Community Day➡️ ectrims.eu/msmilan2023-ms… An event for patients with patients and an invaluable opportunity to ask questions to MS experts about the latest research advances 💡Do not miss our session moderated by Paola Zaratin 🕒15:00-17:00 CEST

And so the new edition of PROMS Plenary 2023 Event begins! Prof. Comi (ECF) opens the session by welcoming and acknowleding the members of the initiative! He is followed by Dr. Peer Baneke (MSIF) and Helga Weiland (ECT of patients)

Our SSC Co-Chairs (Paola Zaratin and Patrick Patrick Vermersch ) get to the lectern to illustrate how to reach a new humanism in research and care for MS treatment: tunrecognized progression, patient-generated data and digital technologies, all coded through patient engagement!

Our ECT member Angela White tells us about the personal perspective in only having periodic consultaitions: A "whack-a-mole" game that only provide snapshots of symptoms. Much more remains to be done.

Time for our Keynote guest on stage: Prof. Valerie Block, PT DPTSc delivers her intervention on uncoregnized progression in MS: the limitations of our current clinical research & care measurements and what should be done to better assist MS interventions

Tim for our multi-stakeholder Rountable on next steps on recognition of disease progression! Both online and live participants, including Xavier Montalban Cemcat (Moderator), Valerie Block, PT DPTSc , Paul Kamudoni (Merck Healthcare ), Daniel Ontaneda and Prof. Soelberg Sørensen

Introducing Session 2 on Valuing Experiential Knowledge of PwMS: Prof. Mario Alberto Battaglia, Italian MS Society President

Sitting at the same table, PwMS collaboraitng with Researchers in delivering a survey designed by and for PwMS. Giampaolo Brichetto AISM - Associazione Italiana Sclerosi Multipla and Susanna van Tonder sharing the floor and discussing design and preliminary results of this ambitious consultation at global level

We thank the colleagues from European MS Platform and the speaker Patricia Moghames for sharing their experience of the Impact of Multiple Sclerosis Symptoms (IMSS) Survey!

Dr. Tim Coetzee opens the new session on "Lessons Learnt from existing PROMs", leaving the floor to our WG2 Co-Leader Dr. Robert McBurney from the Accelerated Cure Project. We now turn to the use of PROs in clinical management and the experience of national registries

Session 3 of the Plenary Event is a great opportunity to collect expert opinions on PRO use (Dr. Jeremy Hobart) as well as the direct experience of 4 MS Registry experiences, including the UK one (Rod Middleton ), Sweden (Prof. Jan Hillert), the Italian PROMOPROMS database and more.

Heading into discussing the exciting opportunity of PRO measurement through digital tools. Hans-Peter Hartung moderates a session including the PROMS Ehealth catalogue (Liesbet PEETERS ), Mobilise-D EU case-study, Industry experiences (Roche @adscientiam ) and PwMS perspectives

Guy Peryer Guy Peryer sharing his perspective as a person living with #MS on digital #PROMS: 🔸️PROMS should be co-designed and should be meaningful to both clinicians & patients 🔸️ It is indispensable to prioritise #ethical considerations on data sharing! Global PROMS Initiative

Dr Guy Peryer, member of Global PROMS Initiative Engagement Coordination Team, shares his perspective on digital PROMs for #MS - beneficial if: ➡️ they've been co-designed with people affected by MS ➡️ with a specific purpose that is understood by both the patient and clinician

Time to hear from the Regulatory Agency's Perspective at the PROMS Plenary Event. Kaisa Immonen 🇺🇦 from the #EuropeanMedicinesAgency reports the experience of the EMA Initiative on Patient Experience Data (PED)

🌟 New Language, New Perspectives! PROMS is Listening to You! We're excited to announce the launch of our survey also in 🇩🇰Danish, developed with valuable input from patients. 🔗 Participate and share your insights here: proms-initiative.org/survey-proms/