Patient Reported Outcomes for

Multiple Sclerosis

Empowering Patients, Improving Research and Care”

An initiative jointly led and coordinated by the European Charcot Foundation and the Multiple Sclerosis International Federation, with the Italian MS Society acting as the lead agency for and behalf of the Global MSIF Movement

Doctors and patients

Our Vision

The PROMS Initiative seeks to change the way healthcare research and delivery is done by incorporating the perspectives, preferences, and experiences of patients into the process. This approach is known as “participatory medicine,” and it puts patients at the center of decision-making, rather than solely relying on the expertise of healthcare providers.

To achieve its vision, the PROMS Initiative recognizes the need for a structured framework for participatory governance and a system for assessing the impact of its efforts. This includes involving patients and other stakeholders in the development and implementation of healthcare research and delivery initiatives, and measuring the outcomes of these initiatives in a meaningful way.

The ultimate goal of the PROMS Initiative is to improve the quality of care and outcomes for patients, by ensuring that their voices are heard and their experiences are taken into account in all aspects of the healthcare system.

Our Mission

Why is the Initiative needed?

The PROMS Initiative is focused on improving the health and quality of life of people living with MS, by incorporating their perspectives and experiences into the scientific research and care continuum. The aim is to create a stronger, more patient-centered approach to healthcare, which will benefit those with MS and potentially other patient populations as well.

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Enriching Science WITH and OF patient input

The power of the Science WITH Patient Input relies on an innovative framework used to engage patients. Within this framework, Patients and Patient Organizations are playing an important role to define and implement the “how to” of multi-stakeholder governance (EU H2020 “MULTI-ACT” project and toolkit) and patient engagement (under EU Responsible Research & Innovation [RRI] guidelines).

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What are PROs/PROMs?

A patient-reported outcome (PRO) is a report of a person’s health condition that comes directly from the person, based on his/her own perception. PROs allow an individual to share their lived experience about their health or quality of life.

Examples include how they feel, what symptoms they are experiencing, or what they are able to do.

A patient-reported outcome measure (PROM) is a measure or tool that records and reports health-related data from patients – passively or actively.

In recent years, there has been a shift away from the conventional models of care delivery towards a patient-centered approach. It has been acknowledged that high-quality care necessitates patient information regarding their feelings, their symptomology, and the effects of the care management pathways undertaken.

Thus, the innovative concept of patient generated data rotates around three main dimensions: patients’ views of their health status while living with the disease (PROMs), the perception of their experience under treatment (PREMs) and even value feedback on their interaction with medical devices (PPI).


Patient Generated  Data

Four Strategic Priorities

What do we want to achieve?

Female doctor using a microscope
Doctor writing papers
Girl looking Mobile
men shacking hands

Working Group 1

Research, Development and Validation

Working Group 2

Clinical management

Working Group 3



Working Group 4

Healthcare system and Policies

Latest News and Events

Digital connecting data

WG3 eHealth Survey

eHealth applications and measures are thought to form the future foundation of patient reported and provided outcomes. Thus, PROMS WG3 is conducting a state-of-the-art analysis through collecting information about and analyzing existing tools, devices and methods for digitally enabled collection and assessment of PROMS. These include active and passive measurement of PROs related to functional domains and their interdependencies in MS […]

Proms  Plenary

PROMS Plenary 2022

Under the title “Ensuring representativeness of PRO assessment”, the Proms Plenary Meeting 2022 took place last November in Baveno (Italy). After two years of restrictions due to the Covid pandemic, the event was held in presential form.

After a welcome address by Prof. Giancarlo Comi (Co-Chair of the Executive Committee) and the presentations by Patrick Vermersch and Paola Zaratin (both Co-Chair of the Scientific Steering Committee) the day was divided into four different sections […]




Is the experience of patients with MS used to influence health policies and decision made in health system?

ECTRIMS is the world’s largest professional organisation dedicated to the understanding & treatment of Multiple Sclerosis.

The PROMS Initiativeis thrilled to announce that it will be featured in the 2022 edition of its annual international conference devoted to basic and clinical research & care for people Living with MS.