Global initiative places the patient voice front and centre in MS research and care

Today, the European Charcot Foundation together with the MS International Federation and the Italian MS Society, launch a new initiative to put the patient experience at the heart of research and healthcare for MS. The Italian MS Society will act as the lead agency for, and on behalf of the Global MSIF Movement.

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 – and place the patient voice front and centre in research, clinical trials of new therapies, and the design of healthcare systems.

People with MS are the first experts on what it means to live with this disease and on the impact that a treatment has. 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. They differ from other physical aspects clinically, such as visible signs of nerve damage.

The use of PROs in research and healthcare is not new in the medical field. PROs are part of the future of healthcare, and their wider use will mean better care for people affected by MS.

In MS, the challenge is that many different PROs are currently used across the globe in research and clinical care. This can lead to difficulties comparing how different treatments or therapies will affect people with MS and comparing the results from different research projects. It also means that some types of patient experience are very hard to measure with the PROs currently available, particularly relating to people’s experiences of progressive MS.

The PROMS initiative, launched today, 12 September 2019, will take a global approach to tackling this challenge. It will advocate to be used in research and clinical care, and develop new PROs to meet the needs of , researchers, health professionals, industry and regulators. The initiative aims to and aspects of living with MS that matter most to patients.

Engaging people with direct experience of MS in 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 Associazione Italiana Sclerosi Multipla (the Italian MS Society), who will act as the lead agency on behalf of the global MSIF movement.

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.’

Professor 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.’

Professor Mario Battaglia, President of the Italian MS Society 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.’