Blog courtesy of European Charcot Foundation (ECF), a Patient Community Day Supporting Partner
For many people living with multiple sclerosis (MS), the most challenging aspects of the disease are not always visible on MRI scans or captured by clinical tests.
Fatigue, pain, cognitive changes, reduced manual dexterity, mobility difficulties, and emotional impact can deeply affect daily life. Yet these experiences are still not measured consistently in research or routine care.
A recent Editorial in The Lancet Neurology calls for a shift in how treatment effectiveness and disease progression are evaluated. Traditional indicators such as relapse rates, imaging, and disability scales remain important, but they no longer tell the whole story. To understand whether a therapy truly makes a difference, the real-life experience of people with MS must be systematically considered.
In the same issue, experts involved in the Global PROMS Initiative highlight that even when treatments appear successful according to conventional clinical measures, many people still experience symptoms that significantly affect their quality of life or feel that their condition is worsening.
This is why patient-reported outcome measures (PROMs) are essential: they make visible what matters most to people living with MS.
The Global PROMS Initiative brings together people with MS, researchers, clinicians, patient organisations, regulators, and industry to promote the consistent and global use of these measures. Through its engagement structures, people living with MS contribute directly to shaping research priorities, clinical trials, and care pathways. Their experience becomes scientifically meaningful data that can influence decision-making.
This change is also being recognised by regulatory authorities. The European Medicines Agency has highlighted the growing importance of patient experience data in the evaluation of new therapies, signalling a broader transformation in how innovation in MS is assessed.
For the MS community, this is more than a scientific discussion. It is a sign that their voices, priorities, and daily challenges are finally being acknowledged as central to progress.
At a time of major advances in MS diagnosis and treatment, integrating patient-reported outcomes offers a real opportunity to develop therapies that not only slow disease progression but also improve quality of life — helping people with MS live better, every day.
Read more about PROMS here: https://proms-initiative.org/news/
About the European Charcot Foundation (ECF)
The European Charcot Foundation (ECF) is an independent non-profit advancing multiple sclerosis (MS) research. Governed by a co-opted Board of leading active MS researchers worldwide, it connects 500 MS institutes and 1,500 researchers. Supported by private partners, MS societies and industry, ECF helps align key stakeholders and highlights new research directions through its Annual Meetings. Registered in Brussels, Belgium.
Blog courtesy of European Charcot Foundation, a Patient Community Day Supporting Partner. View the original article here.