FutureMS: what is it and why is it important? A blog.
7 December 2017
We are delighted to feature two blog posts by a guest science writer, Dr Hannah Parkin. In this, the first blog, Hannah discusses the FutureMS project: what it is and why it is important.
What is in store for me and my MS?
As you sit facing the neurologist, a diagnosis of multiple sclerosis can bring a rush of many thoughts, emotions and questions. Future prognosis is often the first; you want a clear idea of what to expect over the coming months and years, and which of the available treatment options will best control your MS.
We are at an exciting time in MS research, with promising projects and clinical trials giving rise to 11 currently available disease modifying drugs for relapsing-remitting MS. Unfortunately though, MS is not a ‘one size fits all’ condition, and this makes it difficult to provide a perfect treatment and outlook path for each person immediately following their diagnosis. This can make you feel hidden under the MS ‘cloud of uncertainty’, wondering why your neurologist and MS nurse are advising you to try different treatment options and ‘see how you feel’, while using the phrase ‘I think’ more often than you’d like.
Towards personalised medicine
We want to change this. We want every single person newly diagnosed with relapsing-remitting MS to have crystal ball answers to their future prognosis and know that the treatments offered to them are absolutely the best choice.
MS comes as a scale, ranging from mild, with few and infrequent relapses, to a more complex, aggressive and rapidly evolving condition. This brings uncertainty not only to you the patient, but also to medical professionals. Neurologists and MS nurses need to be able to identify where on the scale you sit, which therapy lies on the parallel treatment scale, and how your position on the scale might change with time.
If, for example, we could predict that your MS is likely to take a calmer route, you could avoid the use of harsher treatment options and the side effects that they bring. Equally, if your MS is thought to be of a more progressive nature, it would be beneficial to start the relevant treatment early and gain the advice and support you require as soon as possible.
This tailoring of MS treatment comes under the ‘personalised medicine’ goal that medical research into many conditions is aiming for and to achieve it, we need your help.
So what is FutureMS?
FutureMS is a research project that aims to predict the future by looking into the past. We want to ask if there are key MS features, observed at or soon after diagnosis that could be used to better predict a person’s future MS, allowing tailored treatment and a more concrete future prognosis. How often should you expect a relapse? How serious will they be? It may be that your genes, early lesions or simple blood test measures hold clues to the nature of your MS in years to come. While we don’t know what these are yet, we want you to join us on our quest to find the calm ciphers or flashing warning signs.
We want to first create detailed images of hundreds of people in Scotland that have been newly diagnosed with relapsing-remitting MS using lifestyle questionnaires, clinical examinations, MRI (magnetic resonance imaging) brain scans and genetics.
We will then follow-up with each individual after one year and take a new brain scan and clinical examination, and have a chat regarding how you feel. We will use this information to see if the initial tests revealed any early indicators of what we observe in your MS after one year, and how this compares with other individuals with a similar or different one-year MS path to you. It may be for example, that a particular lesion pattern early on is associated with no relapses in the first year in a number of people. Future newly diagnosed MS patients with a similar pattern could then be treated accordingly while living with a little more insight into what to expect over the coming twelve months. This sort of knowledge would be a massive step in starting to break up the MS uncertainty cloud, the psychological aspect of MS that many find the hardest to deal with.
The project team
FutureMS has been formed by an alliance of expert medical professionals from the Anne Rowling Regenerative Neurology Clinic, part of the University of Edinburgh, partnered with the Universities of Aberdeen, Dundee and Glasgow, NHS Scotland and the Stratified Medicine Scotland Innovation Centre. This truly influential Scotland-wide team makes for a confident study with huge potential as all of those involved are passionate about improving the lives of those living with MS.
How can I help?
By volunteering to join us you will be part of a pioneering journey that could eventually map out the MS stories of hundreds of people in Scotland over decades, feeding back to inform you and those who are newly diagnosed on how to adapt your treatment and lifestyle to manage your MS in the best way possible.
We are recruiting right now so get in touch to help us on our mission: Removing uncertainty. Predicting your FutureMS.
About the Author
Hannah Parkin is a freelance science writer who has recently completed a PhD in Developmental Neuroscience at the University of Edinburgh.