Vermersch Patrick, Smets Louis, Gold Ralf
Department of Neurology, University of Lille, CHRU de Lille, Lille International Research Inflammation Center (LIRIC), INSRRM U995, FHU Imminent, Lille, France
Managing Director at Ismar Healthcare, Lier, Belgium.
Mult Scler. 2016 Aug;22(2 Suppl):71-7. doi: 10.1177/1352458516650738.
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.
首届和第二届泛欧多发性硬化症多方利益相关者座谈会的设立，旨在加强多发性硬化症领域不同利益相关者之间的交流与沟通，并制定联合行动呼吁，以改善（平等）欧洲多发性硬化症患者获得优质护理和治疗的机会。
总结制定的10项相互关联的综合行动呼吁。
呼吁1：提高欧洲社会对多发性硬化症给患者、护理人员和社会带来负担的认识。呼吁2：加强向欧洲社会宣传多发性硬化症的直接和间接成本负担。呼吁3：开展患者研究，从人文/患者视角（重新）定义治疗目标/终点。呼吁4：开发新工具，更好地衡量多发性硬化症的总体临床负担。呼吁5：制定磁共振成像标准化方案，以优化其作为多发性硬化症残疾进展标志物的应用。呼吁6：支持开展研究，寻找其他（分子）生物标志物，以预测长期残疾进展并（监测）个体治疗反应。呼吁7：协调人用药品委员会/欧洲药品管理局与卫生技术评估的决策过程。呼吁8：制定欧洲药品管理局单独的指南，用于评估非生物复杂药物的后续产品。呼吁9：支持多发性硬化症患者保持（身体）活跃和继续工作，并推动建立专业护理中心。呼吁10：支持多方利益相关者座谈会的持续开展。
