Measuring what matters to people with MS

In November 2023, as members of the PROMS Engagement Coordination Team[1], 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. We believe that it is important that people with lived experience are at the heart of developing and deciding on which PROs and PROMs are used, so that the outcomes of research are meaningful to those lived experiences. 

[1] Zaratin, P., Vermersch, P., Amato, M. P., Brichetto, G., Coetzee, T., Cutter, G., … & Groups, P. I. W. (2022). The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions. Multiple Sclerosis and Related Disorders61, 103757.

PROMS Plenary 2023

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

The event was first and foremost a great opportunity to confirm the need of a renewed concept of value that needs to be applied from clinical research to care, one that provides content of validity through a humanistic process that makes the experiential knowledge of people living the disease scientifically meaningful for all the stakeholders

MULTI-ACT ECT is vital to achieve a representative patients’ engagement.


Our Brains, Our Future: the value of brain research – from basic to clinical – to improve patient outcomes in Europe

On November 28th, the PROMS initiative had the privilege to participate in the symposium “Our Brains, Our Future: the value of brain research – from basic to clinical – to improve patient outcomes in Europe, a key stakeholder meeting co-organised by the European Brain Council in partnership with the Spanish Brain Council (Consejo Español del Cerebro) and the Spanish National Research Council (CSIC), under responsibility of the Spanish Presidency of the Council of the EU. 

The WHO framework for the meaningful engagement of people living with NCDs, mental health, and neurological conditions

Last month, the World Health Organization (WHO) has released a new framework for the meaningful engagement of people living with noncommunicable diseases (NCDs), mental health, and neurological conditions.

The WHO framework for meaningful engagement aims to use a rights-based approach to address health inequities and achieve health for all. The framework outlines the vision and pathway to involving individuals with lived experience in co-creating relevant policies, programmes and services, i.e. what matters to them, and sees meaningful engagement as a way to improve health outcomes.

Read More

Limitations of Patient Reported Outcomes: Who Tells the Truth?

Important post highlighting the challenge to extract objective and clinically reliable information from Patient Reported Outcome (PRO) and experience measures (PREMs) 

As members of the PROMS Initiative we acknowledge the challenge.

Read More

Patient reported outcome assessment must be inclusive and equitable

To understand how Patient Reported Outcomes should be more focused on equity and inclusivity, check out the recent paper from our previous key-note speaker (Dr. Samantha Cruz Rivera) and her team at the Centre for Patient Reported Outcomes Research (CPROR) of the University of Birmingham.

Read More

38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis

26-28 October 2022

Is the experience of patients with MS used to influence health policies and decision made in health system?

ECTRIMS is the world’s largest professional organisation dedicated to the understanding & treatment of #MS.

The #PROMSinitiative is thrilled to announce that it will be featured in the 2022 edition of its annual international conference devoted to basic and clinical research & care for people #LivingwithMS […]