In this episode of NeuroCentury, Paweł Świeboda talks to Prof. Paola Zaratin, Director of Scientific Research at the Italian Multiple Sclerosis Society and a global champion for greater patient engagement. The conversation took place on the margins of last week’s Brain Innovation Days organized by the European Brain Council in Brussels (26-27 October 2023).
It is a unique time to be speaking about Multiple Sclerosis (MS). The first disease modifying treatment emerged thirty years ago this year and there are now over 30 treatments approved in the US. Progress has been such that the word cure has firmly entered the vocabulary as a function of greater understanding of the malfunction of the immune system of people with MS and learning from earlier clinical trials.
The conversation covers the current and future research agenda for MS cure, the nature of MS as a disease of the entire lifespan, development of standards for patient-reported outcomes and their co-creation with patients, the case for a paradigm shift from a patient-centric approach to a model infused with patient input throughout the scientific process, the MULTI-ACT model framework to understand how people affected by MS can give their contribution, need for enabling tools to encourage patient engagement in research, the case for actively embedding patients in research and the role of funding agencies.
#NeuroCentury #brain #multiplesclerosis #BrainInnovationDays #brainhealth
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Music for the NeuroCentury podcast is composed by Rafał Kulczycki
