Global PROMS Initiative

🌟 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/

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

Guy Peryer @guy_per 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! @PromsInitiative

Heading into discussing the exciting opportunity of PRO measurement through digital tools. @HansPeterHartu1 moderates a session including the PROMS Ehealth catalogue (@LiesbetPE ), Mobilise-D EU case-study, Industry experiences (@Roche @adscientiam ) and PwMS perspectives

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 (@g5maniac ), Sweden (Prof. Jan Hillert), the Italian PROMOPROMS database and more.

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

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

Sitting at the same table, PwMS collaboraitng with Researchers in delivering a survey designed by and for PwMS. Giampaolo Brichetto @aism_nazionale and @Susanna_Eliza sharing the floor and discussing design and preliminary results of this ambitious consultation at global level

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

Tim for our multi-stakeholder Rountable on next steps on recognition of disease progression! Both online and live participants, including @XMontalban @cemcat_em (Moderator), @ValerieBlock1 , Paul Kamudoni (@MerckHealthcare ), @DanOntaneda and Prof. Soelberg Sørensen

Time for our Keynote guest on stage: Prof. @ValerieBlock1 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

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.

Our SSC Co-Chairs (@paolazaratin and @Patrick26046484 ) 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!

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)

@SolvingMS @MSIntFederation @tina_parodi @aism_nazionale Thank you for your support @SolvingMS!

@MSIntFederation @tina_parodi @PromsInitiative @aism_nazionale We are sharing the #PROMSSurvey in our MS research study group. Thank you!

Have you participated in our global survey made by people affected by MS? Available in six languages, the survey aims to understand the experiences and impact of MS globally. Find out more and take part: msintfederation.org/PROMSSurvey @PromsInitiative @aism_nazionale

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 @paolazaratin 🕒15:00-17:00 CEST

Are you at #MSMilan2023 and would like to meet us? Pass by the @EuropeanCharcot 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!

🌟 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!

🗣️ 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! 🌟

The survey aims to find out which symptoms have the greatest impact on the lives of PwMS. It is available in six different languages: English, French, German, Italian, Portuguese and Spanish. All information on homepage: proms-initiative.org

Their direct experience with the disease has allowed us to create a questionnaire in which people with and affected by Multiple Sclerosis (PwMS) have a unique opportunity to contribute to the advancement of new and improved (PROs) by sharing their perspectives and experiences.

🆕The PROMS Survey is out! We are proud to launch a survey developed by our team of researchers in which patients provided an essential input in designing the questions.