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Global initiative to integrate patient input in MS research and care

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The European Charcot Foundation and the International MS Federation have launched a new global initiative to put patient experience at the heart of MS research and healthcare. The Italian MS Society will act as the lead agency on behalf of the Global MSIF Movement. The initiative was presented on 12 September at ECTRIMS 2019.

The Patient Reported Outcomes Initiative for MS (PROMS) will bring together the global MS community, people with and affected by MS, healthcare workers and researchers, healthcare industry and many more- to enable science with and of patient input in research, clinical trials of new therapies, and the design of healthcare systems.

Patient Reported Outcomes (PROs) reflect the experiences that patients have in relation to their treatment or condition. This could include how they feel, their symptoms or what they are able to do. 

People with MS are the first experts on what it means to live with this disease, on the impact that a treatment has, on the decisive aspects of their life to which a new drug or rehabilitation intervention must respond. In order for their voice on these issues to have a full meaning that can be shared by all the actors in the field, they have to be scientifically qualified (science of patients input).

Enabling PROMS initiative will ensure an informed and quality participation of people with MS in the decision-making processes of research and healthcare regarding their treatments and performances. The initiative aims to focus on the symptoms and aspects of living with MS that matter most to patients.

Efforts to enable the uptake of existing PRO into clinical practice and regulatory agencies decision-making processes will be greatly enhanced and informed by a commonly held strategic PRO research agenda and roadmap, shared by all relevant stakeholders. 

The PROMS initiative, launched today, will take a global approach to tackling this challenge. It will advocate for a set of standardised PROs to be used in therapies development and health care and promote research to develop new PROs to meet the needs of all relevant stakeholders. 

Engaging people with direct experience of MS in governance is crucial in achieving the initiative’s overall mission, as is measuring the impact of the initiative against what matters most to patients. 

The programme of work will be led and coordinated jointly by the European Charcot Foundation and the MS International Federation. It will build on the experience and expertise of the Italian MS Society, who will act as the lead agency on behalf of the global MSIF movement.

Giancarlo Comi, President of the European Charcot Foundation said:
“This global initiative aims to give value to the “patient voice” with a multistakeholder approach. We need shared and validated PROs to be used both in experimental medicine and in clinical care.”

Peer Baneke, Chief Executive Officer of the MS International Federation said:
"This exciting initiative will transform the future of research and clinical care. It gives the global MSIF movement a unique opportunity to ensure the voices of people living with MS right around the world are placed at the forefront of MS research, trials and healthcare design."

Mario Battaglia, President of the Italian MS Society Foundation said:
"The global MS movement will play a pivotal role to implement a global master framework for systematic engagement of people with MS in health research and care. The international experience in applying framework for Multistakeholder Initiatives and on PROs for MS research and healthcare positioned Italian MS Society as lead agency of PROMS initiative."

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