ECTRIMS is the world’s largest professional organisation dedicated to the understanding and treatment of Multiple Sclerosis. The PROMS initiative was featured in several activities of the ECTRIMS 2022 edition of its annual international conference devoted to basic and clinical research & care for People living with MS (PwMS).
The first appointment was the Symposium organized by the European Charcot Foundation (one of the three lead organisations of PROMS) on the specific subject of “The patient at the centre – role of patient reported outcomes”. Many of the invited speakers are active members of our initiative.
- Mrs Helga Weiland (Co-chair of the Engagement & Coordination Team for PwMS at PROMS) introduced the session.
- Prof Mario Alberto Battaglia (President of the Italian MS Society Foundation) presented the framework of PROMS to the wider audience.
- Prof Letizia Leocani (Università Vita-Salute San Raffaele/ co-leader in PROMS) discussed ehealth progresses to capture “patient voice”.
- Dr Usman Khan (Visiting Scholar in Health Policy & Management at KU Leuven and Managing Director at the Good Governance Institute / WG4 co-leader in PROMS) discussed if and how PROs can be effectively implemented in decision processes of healthcare systems.
The second contribution was an e-poster developed by WG4 (Healthcare systems and policies) enquiring over the use of PROs in medical decision-making realities across the globe.
The e-poster’s title is “The global Patient Reported Outcomes for Multiple Sclerosis Initiative: is the experience of patients with Multiple Sclerosis used to influence health policies and decisions made in health systems”.
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The PROMS initiative was also physically present at the ECTRIMS2022 physical exhibition of the Amsterdam venue. It held a booth connected to the one of the European Charcot Foundation and the MS Data Alliance. More information on the initiative was available during the event, with a special emphasis on inviting stakeholders to contribute to the upcoming eHealth Catalogue of existing PROs-supported technologies for people living with MS.
Lastly, PROMS members have also been active outside of the direct scope of the initiative’s activities. PD Dr. med. Marcus D`Souza (Senior Physician at the Department of Neurology and the Innovation Lab of the University Hospital Basel, Switzerland / WG3 member) was an invited speaker at Satellite Symposium 11: “New tools for new challenges in multiple sclerosis”. Dr. D’Souza presented an intervention on “Challenges in detecting progression early in MS and emerging role of patient-reported outcomes” alongside promoting the PROMS initiative to a broader scientific circle.
PROMS was thrilled to both engage and be engaged with scientific and stakeholder circles during the most prestigious global conference on MS. Active participation into such activities (also reinforced by renewed physical gathering and networking) precisely fits the scope of awareness-rising and high research quality standards promoted by our initiative.
We will be looking forward to bringing even further research results to the ECTRIMS 2023 edition!