How MS organisations can shape research

MS organisations can play a vital role in making research more relevant to people living with multiple sclerosis, delegates heard at MSIF’s hybrid Global MS Research Meeting in London and online on Tuesday 6 October 2026.

The workshop opened the MSIF Global Networking Meetings, bringing together MS organisations from around the world to share practical examples of how trusted community relationships, international partnerships and accessible methods can turn lived experience into evidence, whatever their size or resources.

‘Every MS organisation can contribute to research. We can share our knowledge, join collaborations and support projects. We can also help researchers understand what matters most to people with MS.’Mario Alberto Battaglia, President of MSIF. ‘

Across presentations and table discussions, participants considered how MS organisations can set research priorities, connect researchers with communities, bring lived experience into study design and share findings in accessible ways. They also explored how organisations can support research with limited resources.

Starting with the questions that matter

Sumaya Caldas Afif from the Brazilian MS Association, ABEM, described how research can begin by listening to people living with MS. Community members raise questions about work, symptoms, reproductive life, stigma, quality of life and rehabilitation. MS organisations can then work with neurologists, multidisciplinary teams, hospitals and universities to turn these priorities into research questions and protocols.

ABEM’s approach makes research a two-way process. The organisation supports participation through accessible communication, data collection and follow-up. It then brings findings back to the community through services, information, advocacy, conferences and new collaborations.

This approach matters in settings where experiences may be underrepresented in research. ABEM estimates that around 40,000 people live with MS in Brazil, although there is no complete national registry. Its presentation highlighted that 26.6% of people surveyed waited more than five years for a definitive diagnosis, while 56.8% initially received an incorrect diagnosis.

ABEM shared examples of national research built with the community. These included a survey involving 464 people on treatment and absence from work, and a study of professional inclusion with 295 participants. Other work has explored reproductive life, stigma and patient involvement in microRNA research.

The organisation also described a partnership with the University of São Paulo and a multidisciplinary team. The work began with research on neuromodulation and rehabilitation, including manual dexterity and gait. It has since developed into work on working memory, fatigue and mental health using virtual reality.

Starting with existing relationships

A central message from the workshop was that meaningful research does not always require a laboratory, a large budget or a dedicated research department. Organisations can begin with the resources they already have: trusted relationships with people living with MS, local support groups, community services and communication channels.

ABEM outlined a low-resource model that begins with identifying community priorities and building a small scientific network. Organisations can use accessible methods, including online questionnaires, routine clinical assessments and academic projects. Consent, data protection, clear authorship and funding disclosure must remain central. The final step is to return and share findings in ways that are useful to participants, services and advocacy.

This model resonated with participants. Both online and in-person groups said that surveys, structured support-group conversations and digital feedback tools can generate valuable evidence on local experiences. They also stressed that findings must return to communities in clear, useful formats, rather than being limited to academic journals or conference presentations.

The Multiple Sclerosis Society of India shared one example. They used findings on diagnostic delays from MSIF World MS Day poster data to develop an MS Symptom Card. A QR code on the card enabled people to share feedback, creating a simple route from global evidence to local action.

Participants also acknowledged the barriers. Smaller organisations may have no dedicated research staff and face significant demands from day-to-day member support. They called for clearly defined opportunities to contribute, practical support for participation, help with analysis and stronger links with researchers.

Building connections across borders

The meeting showed the value of international collaboration. MS organisations can share knowledge, contribute to global initiatives and support research through networks such as the Atlas of MS, the International Progressive MS Alliance, the Patient Reported Outcomes in MS Initiative and the Global MS Prevention Initiative.

Dr Antonia Kaltsatou from the Greek MS Society presented the Be Cool rehabilitation programme as an example of how an MS organisation can connect a research idea with daily life. The six-month hybrid programme combined cooling, exercise, nutrition and psychological support. These components are described in the open-access study protocol for the programme.

The Greek MS Society helped provide the organisational setting, ethics oversight, recruitment network and continued contact that supported participants during the programme. The experience showed how MS organisations can help make research trusted and feasible. They understand the concerns that affect daily life with MS, can reach people through familiar communication channels and can remain connected after a research appointment or intervention ends.

The meeting also heard how fellowships can build lasting research links. Dr Sara Salama, a neuroimmunology consultant in Alexandria, Egypt, spoke about her 2021 McDonald Fellowship, supported by MSIF and FranceSEP. The fellowship enabled her to join Professor Ahmed Toosy’s team at University College London and become part of the international LOCuTuS-MRI and IMSVISUAL collaboration.

Her research followed 95 people after clinically isolated syndrome, a first neurological episode that can suggest MS, for five to six years. Fifty-nine participants, or 62%, received an MS diagnosis during follow-up. Those who later developed MS showed faster thinning in a retinal layer called the ganglion cell-inner plexiform layer on optical coherence tomography eye scans. However, this was one study with 95 people, so larger studies are needed. Eye-scan changes cannot diagnose MS or predict an individual’s future. Further work is needed to understand how the findings relate to MRI scans and whether they should influence future care.

Shared purpose, different starting points

The workshop brought together organisations with very different levels of research capacity. Their examples ranged from dedicated research teams and grant programmes to volunteer-led organisations using support groups, surveys and trusted conversations to understand local needs.

Despite these differences, there was strong agreement that people living with MS should have a meaningful role in research. Participants called for lived experience to shape research priorities and study design, and for findings to be returned to communities in clear, useful formats. They also emphasised that research should lead to local benefit, rather than ending with data collection or publication.

The discussions showed that there is no single model for involvement. The Greek MS Society described partnerships with universities and rehabilitation departments. EME in Spain highlighted grants, links with clinicians and professional societies, and the value of its branch network.

The Multiple Sclerosis Society of South Africa described how its support groups and member services provide insight into diagnostic delays, treatment access and everyday challenges. As a small, volunteer-supported organisation, it also identified capacity as a major barrier. It called for accessible opportunities to contribute, clearly defined roles, support for participation and practical help to turn community insights into structured evidence.

The group’s shared conclusion was that accessible opportunities, clear roles, patient engagement and global collaboration can help organisations contribute to research. By sharing knowledge, resources and diverse perspectives, MS organisations can make research more representative and more useful to the communities it aims to serve.