Call for a European platform for patient-centered outcomes11.11.2015
The European Multiple Sclerosis Platform (EMSP) took the opportunity of the multiple sclerosis (MS) debate organised on 10 November in the European Parliament in Brussels to call for the creation of a single European platform for patient-centered outcomes.
Participating as a key speaker at the debate titled “Multiple sclerosis can be defeated: let’s join forces!”, EMSP’s Deputy Chief Executive Christoph Thalheim asked for a joint action at European level which would allow the data pooling between MS registries to continue, following the example of EMSP’s European Register for MS (EUReMS) project:
“By pooling and analysing MS data centrally we can come to better evidence to support decisions regarding MS. Our idea is to focus on what are the specific outcomes relevant for patients, so not only MRI results but also concepts such as quality of life.”
Christoph Thalheim added that should such a European register for patient-centered outcomes come to fruition, it could be a model to use for all chronic diseases and not just for multiple sclerosis. Find his full presentation here.
The debate was chaired by Member of the European Parliament (MEP) Daniel Dalton and was also attended by MEP Adam Kosa, one of the most active supporters of EMSP’s Employment Pact for people with MS and other neurodegenerative diseases.
Also a key speaker, Prof. Patrick Vermersch talked about the Pan-European MS multi-stakeholder colloquium which he is chairing. One of the objectives of this initiative, he mentioned, is to understand the global consequences of multiple sclerosis:
“People with MS are not all living in a wheelchair and, in any case, physical disability is only the tip of the iceberg. Symptoms such as fatigue and depression are also a very significant burden.”
Prof. Vermersch’s recommendation for MS stakeholders is to keep people with MS active and in work. Find his full presentation here.
The presentations also featured a number of pictures from EMSP’s Under Pressure project, a multimedia initiative raising awareness on the huge discrepancies in MS management across Europe.