News
Patient reported outcomes in NMOSD reflect a high disease burden and do not correlate with the EDSS
A Canadian cohort study examines pain, fatigue, anxiety and depression in people with NMOSD, highlighting aspects of disease burden that are not captured by the Expanded Disability Status Scale.
Bladder health and lived experience in MS take centre stage at EAU Congress 2026
At EAU Congress 2026, MSIF shared Global PROMS evidence on bladder health and lived experience, showing how patient-reported outcomes can support more responsive care and shared decision-making in multiple sclerosis.
The Use of Patient‑Reported Outcome Measures in Developmental Age: A Complementary Tool for Pediatric Multiple Sclerosis Prognosis
This paper explores patient-reported measures in children and adolescents with MS, highlighting the need to recognise fatigue, mood changes and cognitive difficulties that adult assessment tools may overlook.
When Experience Matters: How Patients Are Shaping the Future of Treatment Progression in Multiple Sclerosis
An editorial and correspondence in The Lancet Neurology highlight why the daily experiences of people with MS should help shape research, the assessment of progression and the development of future treatments.
PROMS Initiative shines at ECTRIMS 2024: first survey results and breakthroughs in Patient-Centered MS Care
PROMS presented the first results of its global survey at ECTRIMS 2024. Responses from 5,218 participants in 69 countries underline the importance of patient perspectives in research and clinical care.
Measuring what matters to people with MS
Members of the PROMS Engagement Coordination Team reflect on the 2023 meeting in Baveno and explain why people with lived experience should help decide which outcomes matter in MS research and care.
PROMS Plenary 2023
The PROMS community met in Baveno on 8 November 2023 to discuss how patient experience can connect clinical research and care, and strengthen meaningful participation across the initiative.
Our Brains, Our Future: the value of brain research – from basic to clinical – to improve patient outcomes in Europe
PROMS joined a European stakeholder symposium on the value of brain research, exploring how collaboration from basic science to clinical practice can improve patient outcomes and inform health priorities.
The WHO framework for the meaningful engagement of people living with NCDs, mental health, and neurological conditions
The WHO framework sets out how people with lived experience can help shape policies, programmes and services for noncommunicable diseases, mental health and neurological conditions through meaningful engagement.
Limitations of Patient Reported Outcomes: Who Tells the Truth?
This discussion examines the reliability and sensitivity of patient-reported outcomes and experience measures, and considers how digital health tools could strengthen active and passive measurement in multiple sclerosis.
Patient reported outcome assessment must be inclusive and equitable
A paper from the University of Birmingham explores equity and inclusion in patient-reported outcome assessment, and how these measures can support decisions in trials, clinical care and health policy.
PROMS at ECTRIMS 2022
PROMS took part in the 38th ECTRIMS Congress, held from 26 to 28 October 2022, highlighting the role of people’s experiences in MS research, care and health-system decisions.
