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.
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.
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).
