Why is it important for people affected by MS to be actively involved in research?

The International Progressive MS Alliance, in collaboration with MS organisations across the world, is conducting a global survey to find out how people affected by MS feel about being involved in research – including being an author of scientific publications.

• Are you affected by multiple sclerosis (MS)?
• Do you want people with MS to be credited for their input in research (science with patient input)?

There is growing global consensus among scientists and clinicians regarding the importance of involving people affected by MS (PaMS) in research. By sharing your experience of living with MS, this ‘experiential’ form of knowledge can be integrated with scientific knowledge and lead to better research outcomes for everyone.

Engaging PaMS in the phases of the research where their engagement is instrumental in achieving the mission and agenda of the research initiatives and making science meaningful to society.

If you are interested in taking part, please click the link here.

• The survey is available in 8 languages: Arabic, English, French, German, Italian, Polish, Spanish and Swedish.
• The survey will take around 10 minutes to complete, and the deadline is 31 August 2023.
• If you have any questions, please contact the research team at: multi-act@aism.it

The survey has been developed by PaMS in collaboration with the Progressive MS Alliance, the Italian MS Foundation (FISM) on behalf of the MULTI-ACT EU Project and EngageMinds HUB. The MULTI-ACT project developed a holistic management model that enables effective cooperation of all stakeholders from research to care and aims to leverage the experiences of patients and other stakeholders and increase their ability to co-create and participate in decision-making processes in healthcare research.