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.

Keywords: Multiple sclerosis; clinician; multi-stakeholders; patient; payer; regulator.