You are invited to participate in a survey created for us, by us.

This survey aims to understand your IT literacy and how you use digital tools to monitor the most frequent PwMS functional domains by exploring your involvement, benefits and long-term limitations. Participating in this survey will help us better understand what is working in terms of digital tools for people with MS, and what needs to be improved.

It’s essential that the voices of people affected by Multiple Sclerosis (MS) are embedded into each stage of the PROMS initiative. Therefore, we created an Engagement Co-ordination Team (ECT) to lead on the engagement of people affected by MS. The ECT is composed of people affected by MS and experts in patient engagement from MS organisations.  Members of the ECT are involved with the design and implementation of projects within the initiative, as well as the strategy for engaging people affected by MS across the world.

2024 Annual Event Highlights: Lessons Learned and Key Insights

The 2024 Annual Event provided an in-depth exploration of the latest advancements in patient-reported outcomes (PROMs), digital health tools, and innovative methodologies in neurological research and care. Key highlights from the event included:

PROMs and Patient-Centered Insights: A comprehensive analysis of how PROMs are redefining the state-of-the-art in personalized care through the utilization of real-world data, emphasizing pivotal initiatives such as MULTI-ACT and BRAINTEASER. These projects exemplify the transformative potential of integrating patient input to develop more responsive healthcare frameworks.

Digital Innovations in Multiple Sclerosis (MS) Care: Critical insights into the role of artificial intelligence and passive digital monitoring tools in enhancing patient autonomy and optimizing quality of life. Emphasis was placed on the need for seamless integration of these tools to reduce patient burden while ensuring robust, longitudinal data collection.

Empirical Research and Findings: Presentation of novel studies on gait, balance, and cognitive PROMs, providing significant evidence of their utility in detecting prodromal signs of disease progression and identifying underexplored patient needs. These findings underscore the importance of developing nuanced assessment tools that capture the complexity of neurological conditions.

Challenges and Future Directions: A thorough discussion on the evolving landscape of patient-reported outcomes in clinical practice, including regulatory considerations and the strategic use of patient-generated data. Emphasis was placed on overcoming current challenges in data standardization, regulatory approval, and the broader adoption of digital health innovations.

2024 Annual Event Highlights: Lessons Learned and Key Insights

The 2024 Annual Event provided an in-depth exploration of the latest advancements in patient-reported outcomes (PROMs), digital health tools, and innovative methodologies in neurological research and care. Key highlights from the event included:

• PROMs and Patient-Centered Insights: A comprehensive analysis of how PROMs are redefining the state-of-the-art in personalized care through the utilization of real-world data, emphasizing pivotal initiatives such as MULTI-ACT and BRAINTEASER. These projects exemplify the transformative potential of integrating patient input to develop more responsive healthcare frameworks.
• Digital Innovations in Multiple Sclerosis (MS) Care: Critical insights into the role of artificial intelligence and passive digital monitoring tools in enhancing patient autonomy and optimizing quality of life. Emphasis was placed on the need for seamless integration of these tools to reduce patient burden while ensuring robust, longitudinal data collection.
• Empirical Research and Findings: Presentation of novel studies on gait, balance, and cognitive PROMs, providing significant evidence of their utility in detecting prodromal signs of disease progression and identifying underexplored patient needs. These findings underscore the importance of developing nuanced assessment tools that capture the complexity of neurological conditions.
• Challenges and Future Directions: A thorough discussion on the evolving landscape of patient-reported outcomes in clinical practice, including regulatory considerations and the strategic use of patient-generated data. Emphasis was placed on overcoming current challenges in data standardization, regulatory approval, and the broader adoption of digital health innovations.

The core of the PROMS participatory governance is an innovative framework used to engage patients. Within this framework, patient advocacy organizations play an important role, as boundary organisations between science and society, to define and implement the “how to” patient engagement.

There are therefore multiple ways in which you can interact with PROMS members, either as a stakeholder organisation/initiative wishing to collaborate with us, an individual expert from the scientific/industry communities seeking to participate in one of our working groups or even as an affected individual or caregiver looking to contribute to our research through patient engagement activities.

PROMS is a multi-stakeholder initiative, including people affected by Multiple Sclerosis, researchers, clinicians, pharmaceutical companies, and MSIF’s member organisations as well as many other types of expert – to do together what we cannot achieve individually.

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The core of the PROMS participatory governance is an innovative framework used to engage patients. Within this framework, patient advocacy organizations play an important role, as boundary organisations between science and society, to define and implement the “how to” patient engagement

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There are therefore multiple ways in which you can interact with PROMS members, either as a stakeholder organisation/initiative wishing to collaborate with us, an individual expert from the scientific/industry communities seeking to participate in one of our working groups or even as an affected individual or caregiver looking to contribute to our research through patient engagement activities.

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At ECTRIMS 2024, the world’s leading event for multiple sclerosis (MS), the PROMS Initiative made a significant impact by presenting the first results from its global survey. ECTRIMS remains a pivotal platform where the latest advancements in MS research and clinical practice are discussed, and this year, the PROMS Initiative took center stage, highlighting the importance of Patient-Reported Outcomes (PROs) in the future of MS care.

The PROMS Initiative gathered once again for its annual Plenary Event in Baveno on Wednesday 8th of November, as a side event of the 31st European Charcot Foundation annual meeting.  

The event emphasized the need for a new approach in clinical research and care, focusing on validating experiential knowledge of those living with the disease to benefit all stakeholders.

In November 2023, as members of the PROMS Engagement Coordination Team (ECT), we travelled from across the globe to Baveno, Italy, to discuss the important topic of how patient reported outcomes can help with “Bridging the gap between clinical research and care”.

PROs are increasingly being used across research and healthcare for all conditions – not just MS.