Conclusions: Calls to action for improving the life of MS patients and their families

Abstract

Background: The first and second Pan-European MS Multi-stakeholder Colloquia were set up to increase cross-talk and communication between the different stakeholders in MS and developed joint Calls to Action to improve (equal) access to quality care and treatment for MS in Europe. Objective & Methods: To summarise the 10 integrated and interrelated Calls to Action developed. Results & Conclusion: Call 1: increase awareness in the European community about the burden MS places on patients, caregivers and society. Call 2: improve communication towards the European community on the direct and indirect cost burden of MS. Call 3: perform patient research to (re)define treatment goals/endpoints from a humanistic/patient perspective point of view. Call 4: develop new tools to better capture the total clinical burden of MS. Call 5: develop a protocol for standardisation of MRI for optimising its use as a marker of disability progression in MS. Call 6: support research to find other (molecular) biomarkers which can predict long-term disability progression and (monitor) individual treatment response. Call 7: align CHMP/EMA and HTA decision-making process. Call 8: develop separate EMA guidelines for evaluating follow-on products of non-biological complex drugs. Call 9: support people with MS remaining (physically) active and at work and stimulate the implementation of specialised care centres. Call 10: support the continuation of multi-stakeholder colloquia.

Introduction: Do we need multi-stakeholder colloquia in MS?

“…10 After introductory presentations on their perspectives by the different major stakeholders, the audience was asked to rank priorities from a list of potential Calls to Action. The outcome of this polling was used to stimulate further discussions among the speakers, a group of experts in the field and the audience, which formed the basis for formulating 10 integrated Calls to Action 11 (listed and described in the Conclusions of this supplement 12 ). On 15–16 May 2015, Patrick Vermersch chaired the second Pan-European MS Multi-stakeholder Colloquium in Brussels to discuss guidance propositions/recommendations developed by four working groups for the Calls to Action and how accelerating adoption of innovation can lead to better care in MS. 13…”

“…In these proceedings, we summarise the content from the presentations, polling results and discussions for each of the stakeholders/perspectives as well as preliminary recommendations on how to tackle the Calls to Action, 12,14–18 which will also be addressed in the European Parliament.…”