The MSA Community Research Group brings together people living with MSA, carers, and family members who are interested in MSA research and may want to help shape its future. Through the group, you’ll receive automatic invitations to our twice-yearly research webinars with leading experts, along with updates and opportunities to get involved in surveys, focus groups. You may also be offered relevant opportunities to share your experiences with researchers and pharmaceutical companies, as and when they arise, helping ensure that studies are meaningful and focused on what truly matters to the MSA community.
Supporting Research Through Lived Experience
The MSA Trust is sometimes approached by pharmaceutical companies, research organisations and individual researchers who want to better understand the lived experience of people affected by MSA. These organisations are keen to learn directly from those living with the condition, as well as carers and family members, to ensure their research is relevant, meaningful, and grounded in real-world experience. By gathering insights from our community, they can improve how studies are designed, identify what matters most to those affected, and help shape future treatments, care, and support. Through the MSA Community Research Group, we’re able to connect these opportunities with people who want to share their experiences and make a difference in MSA research.
In Dec-26 members of our MSA Community completed a survey on behalf of a pharmaceutical company, seeking to understand what matters most to people affected by MSA. The survey gathered input from 240 participants across eight countries, including 30 in the UK (20 people living with MSA and 10 carers). Key themes emerged: 1. Communication matters - maintaining speech and the ability to communicate remains a top priority. 2. Changing priorities over time - focus often shifts from independence and everyday activities towards safety, support, and increasing care needs. 3. Practical barriers to research - interest in research is high, but participation is influenced by factors such as travel, time, coordination, and clarity about what’s involved. 4. Different support needs - people living with MSA highlighted the importance of patient organisations, while carers more often emphasised mental health support. These insights will help to inform future MSA research, improve the experience of taking part in studies, and support a better understanding among pharmaceutical companies of life with MSA for both individuals and carers.
Exclusive Webinars with Leading Experts
Twice a year, our community are invited to join our online MSA Research Webinars, co-chaired by Dr. Viorica Chelban, Neurologist and Senior Clinical Research Fellow at University College London and Dr. Chris Kobylecki, Consultant Neurologist at Manchester Centre for Clinical Neurosciences, Salford Royal NHS Foundation Trust and Chair of our Scientific Advisory Committee. Together they curate an exceptional line-up of guest speakers, ensuring you gain insights from the brightest minds in MSA research. The MSA Community Research Group get automatic invites to these webinars.
Our webinars are fantastic opportunity to connect with researchers, ask questions, and contribute to the conversation about the future of MSA treatment. Our next webinar will take place later in 2026. Our most recent research webinars are available to view via the orange links below.
Nutrition and Exercise in MSA – Feb 2026
Imaging in MSA – Nov 2025
February 2025