November, 21st, 2019
After last September’s public announcement at ECTRIMS in Stockholm, the Patient Reported Outcomes Initiative for MS (PROMS) comes to another key milestone on the road to its mission, that is to 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 new Executive Committee and Scientific Steering Committee members of this unique iniziative have been nominated and announced during the PROMS Meeting held in Baveno (Italy) on November 21st, adjacent to the ECF’s annual meeting.
The Comittees represent at the best the global approach and excellence of this project promoted by the MS International Federation and the European Charcot Foundation, involving the most outstanding experts in the field of multiple sclerosis. The Governance of PROMS initiative includes different stakeholders representating the international MS Community.
The most distinctive welcome to all the new members, thanks to them for choosing to be part of this breakthrough initiative.
P. Baneke, CEO Multiple Sclerosis International Federation (MSIF) (co-chair)
G. Comi, President of the European Charcot Foundation (ECF) (co-chair)
M. A. Battaglia, CEO of Italian MS Society
T. Coetzee, (US National MS Society)
H.P. Hartung, Universität Düsseldorf
X. Montalban, (University of Toronto)
J. Samin, European Charcot Foundation)
P. Valentine, President & CEO @MSSocietyCanada)
Waiting confirmation from person living with MS
P. Vermersch* (SCC co-chair)
P. Zaratin* (SSC co-chair)
*Not voting members
Scientific Steering Committee
P. Vermersch, Centre national de la recherche scientifique – CNRS (co-chair)
P. Zaratin, Italian MS Society (co-chair)
G. Brichetto, Italian MS Society
G. Cutter, UAB School of Public Health
G. Edan, University Hospital – Rennes
G. Giovannoni, Queen Mary University of London
J. Hobart, University of Plymouth Faculty of Medicine and Dentistry
R. Hyde, Biogen
L. Leocani, San Raffaele University
R. McBurney, Accelerated Cure Project for Multiple Sclerosis (ACP)
K. Penner, University of Basel
F. Pammolli, The Politecnico of Milan
B. Uitdehaag, University of Düsseldorf
Waiting confirmation from person living with MS
As announced at ECTRIMS, the Commitees will now guide the PROMS iniziative to bring together the global MS community, people with and affected by MS, healthcare workers and researchers, healthcare industry and many more, in order to maximize impact of Science with and of Patient Input on the health, healthcare and quality of life of people affected by MS, to represent a unified view on PROs for MS to Healthcare Providers, Regulatory Agencies and Healthcare Technology Assessment Agencies (HTAs).
One of the first commitment for the news Committees will be to define the agenda and the composition of the work groups that will focus on the strategic priorities of the PROMS initiative.
Research, validation and development
• Identify the most important functional domains for people with MS that will lead to the prioritisation of functional domains. This is particularly important to ensure the validity of the content.
• Fill critical gaps in the knowledge base that hinder progress towards the development of a clear roadmap for research needs and progress.
• Research, validate and develop relevant PROMs.
• Identify current PROs and PROMs for use in clinical care and collected in regulatory and clinical records and advice.
• Satisfy the position of regulatory agencies on PROs and PROMs (e.g. MSOAC EMA document).
• Promote, coordinate, implement and support initiatives to validate and harmonize ODPs across cultures.
• Establish the current return on e-Health investments for all stakeholders involved.
• Enable patients, doctors and other stakeholders to benefit from the long-term benefits of e-Health.
• Translate standardized data into a performance measure (PRO-PM) that captures the most important results to improve long-term well-being.
• Enable PRO-PMs in innovative reimbursement models, regulatory frameworks and their algorithms to support clinical decisions.
About the MS International Federation The MS International Federation (MSIF) is a unique movement made up of 48 MS organisations with links to many others around the world. MSIF and its members campaign for increased awareness of MS, support scientific developments and improve access to treatments and healthcare. Apart from Italy, MSIF’s member organisations in Australia, Denmark, Germany, the UK and the USA are also involved in the global PRO initiative. Through capacity building, campaigning and information resources, MSIF supports and collaborates with organisations in countries where there is limited provision for people with MS. The global MSIF movement works together to improve the quality of life of everybody affected by MS.
About the European Charcot Foundation The European Charcot Foundation is an independent non-profit organization for advancing Multiple Sclerosis research in Europe. The European Charcot Foundation establishes an interface between pharmaceutical companies and the clinical world. Its collaborative base consists of 500 MS research institutes and 1500 MS researchers. At its Annual Meetings, the Foundation is directive in indicating new lines in MS research. Having identified these lines, the Foundation is then active in finding the funds needed to achieve them. The European Charcot Foundation is a ‘learned society’ governed by a co-opted Board of recognized active MS researchers in Europe, Asia and the Americas. Its main activities are: • the organization of an Annual Meeting and Symposia in Europe, the Americas, the Middle East and Asia • the coordination of European MS research projects and clinical trials • an extensive eLearning platform including webinars by key opinion leaders on relevant topics, critical reviews of data presented , Annual Meeting lectures. 3 • the exchange of MS researchers, clinical practitioners and MS nurses.
About the Italian MS Society The Italian Multiple Sclerosis Society (AISM), is the only organization in Italy that addresses every aspect of multiple sclerosis (MS), through advocating for the rights of people with MS, promoting and providing services and, through its Foundation (FISM), orienting, promoting, and financing scientific research. AISM has substantial experience in promoting and financing MS Research internationally, in applying framework for Multistakeholder Initiatives (coordinator of EU H2020 Responsible Research Innovation MULTI-ACT project) and on PROs for MS research and healthcare. AISM is already working on a pilot project to standardize and harmonize PROs between their own PROMOPRO-MS database and iConquerMS (Accelerate Cure Project) network.