ABOUT US

Our Values

 

The Global Patient Reported Outcomes for MS (PROMS) Initiative is a unique collaboration, aiming to reach consensus on a set of standardised Patient Reported Outcomes (PROs) to be used in therapy development and healthcare.

Most importantly, PROMS is a multi-stakeholder initiative, including people affected by MS, researchers, clinicians, pharmaceutical companies, and MSIF’s member organisations as well as many other types of expert – to do together what we cannot achieve individually.

The Initiative, which was launched in 2019, is led and coordinated jointly by MSIF and the European Charcot Foundation (ECF), with Associazione Italiana Sclerosi Multipla (AISM) as the lead agency.

About US

The PROMS initiative is mission-driven, with a multi-stakeholder governance structure. Over 60 people actively participate in the Initiative from across the globe. It is overseen by an Executive Committee comprising representatives from both MSIF and ECF, as well as one of the co-Chairs of the Engagement Coordination Team.

This last one is a key governance component of the Initiative, since it involves people affected by MS in a committee ensuring that people affected by MS are at the centre of each decision made. The concept of the ECT was developed within the EU funded MULTI-ACT project.

Members of the ECT hold a sit in each of the working groups, carrying out parts of the workand advising on the decisions made by the Scientific Steering Committee. The patients’ team has thus helped clinicians and academics from the working groups to process external feedback and consider their practice and assumptions, giving them ideas of how to effectively drive their work forward. By including people affected by MS to such high degree into the Initiative, individuals from across the world have been given a voice while being treated as equals.

Other governance bodies include:

  • The Scientific Steering Committee, co-chaired by Paola Zaratin from AISM and Patrick Vermersch from ECF, which oversees the scientific agenda and ensures there is coherence across the four key topic areas and the activities of the working groups.

  • The Working Groups, comprising people affected by MS, researchers, clinicians, industry representatives and other experts from across the world who address the four key topics within the scientific agenda. The Working Groups established objectives for their topic area, decided on key research actions to address these objectives and the relative methods and activities required for execution.

  • A series of teams (secretariat, programme management, fundraising and communication) comprising staff from AISM, ECF and MSIF, who manage the global day-to-day operations of the initiative.

PROMS Framework and outcomes

 

The PROMS members are investigating PROs from multiple perspectives and currently streamlined across four interdisciplinary Working Groups (their research and validation; experience and use of PROMs in clinica practice; e-health technologies to collect PROs; uptake of PROs in health policy making).

The main goal of each of the Working Groups in the PROMS Initiative, and how they interrelate, is ensuring that PwMS experiential knowledge is represented in the development of a core data set for MS PROMs.

The work of each group is further led by a Scientific Steering Committee and an Executive Committee, and it is assisted by differentiated units for management (i.e. Secretariat, Fund Raising and Communication).