27th July 2023

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 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 people affected by MS in the phases of the research where their engagement is instrumental in achieving the greatest impact in improving lives and making science meaningful to society.

If you are interested in taking part, please click the link below:


Surveys must be completed by 31 August. The survey is available in eight languages including: Arabic, English, French, German, Italian, Polish, Spanish and Swedish.

The survey has been developed by People Affected by MS in collaboration with the International 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.

Questions regarding the survey can be directed to [email protected].

Progressive MS Alliance

27th July 2023