International Progressive MS Collaborative


To expedite the development of effective disease modifying and symptom management therapies for progressive forms of MS.

strategic plan 2012-2016 identifies progressive MS as one of the three
key priority areas for MSIF’s international MS research going forward
(along with paediatric MS and stem cells). This important research area
has also been identified as a key focus for our global fundraising

Since July of 2011, MSIF and volunteer and staff
leaders from the MS Societies of Canada, Italy, the Netherlands, the
United Kingdom and the United States, have been engaged in discussions
centered on creation of an international collaboration that would
leverage financial and intellectual resources to meet the unmet needs of
people living with progressive forms of MS.

This group is now
seeking to engage the international MS research community to develop
strategies and priorities in the following areas for research related to
progressive forms of MS:

• Experimental models for improved preclinical evaluation of novel therapies,
• Targets/pathways identification and validation/repurposing of existing therapeutic agents,
• Proof-of-concept clinical trial strategies,
• Clinical outcome measures and trial designs,
• Symptom management therapies and rehabilitation strategies.

Community Engagement
collaborative is convening working groups, focused on each of the
priority research areas identified in its initial discussions. Working
groups will be chaired by a research leader and will draw on expertise
of additional experts from academia and industry. These groups will be
asked to identify gaps in the priority areas and suggest funding
strategies and collaborative models that can most effectively address
these needs.

These groups will share their
findings/recommendations at a meeting in London in the last quarter of
2012. Members of the collaborative will then prioritise strategies and
begin to formulate plans to fund research in the identified areas. The
vehicles for funding of this research will be determined by the members
of the collaborative in consultation with their respective
organisations’ scientific and executive leadership.

In an effort
to create momentum around the critical issue of progressive MS, the
collaborative also intends to host an International Scientific
Conference on Progressive MS, tentatively scheduled to take place in
Italy in January of 2013.

Collaborative Members
Dutch MS Research Foundation
Italian MS Foundation
Multiple Sclerosis International Federation
MS Society of Canada
National Multiple Sclerosis Society, USA
UK MS Society

Steering Committee
Peer Baneke, CEO, MS International Federation, UK
Doug Brown, PhD, Head of Biomedical Research, UK MS Society, UK
Dhia Chandraratna, PhD, Head of International Medical and Scientific Research, Multiple Sclerosis International Federation, UK
Timothy Coetzee, PhD, Chief Research Officer, NMSS, USA
Giancarlo Comi, MD, Director of the Department of Neurology, Scientific Institute San Raffaele, Italy
Anthony Feinstein, MD, PhD, Professor of Psychiatry, University of Toronto, Neuropsychiatrist, Sunnybrook Hospital, CA
Robert Fox, MD, Medical Director, Mellen Center for MS, Cleveland Clinic, USA
Raj Kapoor, MD, Consultant Neurologist, National Hospital for Neurology and Neurosurgery, UK
Karen Lee, PhD, VP of Research, MS Society of Canada, Canada
Marco Salvetti, MD, Director, Center of Neurology and Experimental Therapies, La Sapienza University, Italy
Kersten Sharrock, MA, Director of Strategic Alliances, NMSS/FF, USA
Alan Thompson, MD, Dean, University College London Faculty of Brain Sciences, and Chair, International
Medical and Scientific Advisory Board, MSIF, UK
Paola Zaratin, PhD, Head of Scientific Research Department, Italian MS Society, Italy
Kim Zuidwijk, PhD, MS Research Foundation, Netherlands

Progressive MS has been the focus of a lot of behind the scenes activity over the past few years. This initative has now surfaced but there are other activies that have been ongoing for a lot longer than before 2011. So whilst you will say there is not enough action occurring fast enough, Action is occuring so this is good news for ProgressiveMSers, as you are top of the agenda.

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  • This is the disconnect between effort and available treatments,

    Once they arrive things will be different.

  • This is really good news, glad meeting will be held within the next 6 months (well, almost!).

  • There have been many meetings already between members of the different groups. These people far exceed the names given in the post.

    The meeting is a comming together of all the differnt work groups…and has been delayed from the original time because it is difficult to get lots of people together.

    I really hope that something positive comes from this. I think it will happen because there is a real international desire for this to succeed however these global things always take longer than you want.

    This will need egos and self-interest to be left at home otherwise getting concenus between strong (powerful) individuals (often with egos) is like herding cats.

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