More than 2.3 million people worldwide currently live with MS. Of these, more than one million people live with a progressive form of MS. Progressive MS is a type of MS that gets worse over time, affecting areas such as vision, mobility, cognition, ability to work, and independence.

Despite advances in other forms of MS, there are currently no approved treatments for progressive MS. However, this may soon change. Ocrelizumab is an experimental new treatment option for MS, which works by targeting a type of immune cell (called a B cell). This helps to reduce the immune response by stopping these cells from attacking and damaging myelin. Top-line results have been announced from a phase 3 clinical trial looking at the use of ocrelizumab in primary progressive MS and phase 3 clinical trials for relapsing MS were announced as complete in June 2015. Ocrelizumab has already been granted “breakthrough therapy” status by the US Food and Drug Administration (FDA) and now has been granted Priority Review Designation, which means the FDA approval could be granted before the end of 2016.

People with progressive MS need solutions now. It is imperative that the global MS community drive the development of new treatment options.

The Progressive MS Alliance

The International Progressive MS Alliance is a growing global initiative to end progressive MS. The Alliance was established in 2012, by six founding members: MSIF, and the MS societies of Canada, Italy, the Netherlands, the UK and the USA, who made a joint commitment to speed up the development of treatment for progressive MS by removing scientific and technology barriers. The Alliance now has 15 member organisations who, between them, have many years’ experience of MS research and have funded significant developments in research, disease-modifying therapies and symptom treatments.

Progress to date

  • In 2014 the Alliance awarded their first Challenge Awards to encourage scientific innovation, and Infrastructure Awards to promote data sharing and knowledge management. A total of 21 projects, with researchers based in nine countries, were awarded funding of over €1.5 million. The projects focused on clinical trials and outcome measures, biomarkers (measureable indicators) of progression, gene studies, rehabilitation trials, new disease models, and research to better understand the pathology of progression.
  • In 2015 the Alliance selected 11 ‘networks’ (collaborations of at least three research institutions, many of which were multi-disciplinary, from around the world) to receive a Collaborative Network Planning Award of €50,000 for 12 months. These groups and institutions have not worked together in this way before, so the planning awards give the groups of researchers and institutions the time and resources to establish and demonstrate how they will make it work.
  • In September 2016 the Alliance will announce the successful three networks who will receive a four year Collaborative Network Award of €4.2m. As with all of our awards these grants will be decided by an international group of renowned researchers and agreed by the Scientific Steering Committee.

In 2014, MSIF hosted a webinar on progressive MS with Professor Alan Thompson and Professor Olga Ciccarelli from the Institute of Neurology in London to answer questions from people affected by MS from across the world. Among the topics covered in this hour-long webinar are:

  • The best available treatments for progressive MS
  • The role of rehabilitation and exercise
  • Similarities between MS and Alzheimer’s
  • The effect of different diets on progressive MS

Watch the webinar below or read the transcript.