Scotland has one of the highest rates of multiple sclerosis (MS) in the world, with around 10,000 people living with this debilitating condition. It is thought that it is caused by a combination of genetic and environmental factors.
There is no cure for MS, which affects nerves in the brain and spinal cord, causing problems with muscle movement, balance and vision.
The most common type of MS, affecting 85% of people with the disease, is relapsing-remitting MS. This is where people have attacks (called relapses) from which complete or partial recovery (called remission) is made. Over time, most patients will accumulate irreversible disability.
“The problem with relapsing MS is that its natural history or course is unpredictable, you do not know if or when you are next going to have a relapse,” explains Prof Chandran. “This makes it almost impossible for someone with MS to plan their lives. They live under a perpetual shadow and don’t know what the future holds.
“At present, doctors are unable to predict how severe a newly diagnosed patient’s MS is likely to become – and yet this information is fundamental to decision making and choice for the patient. Because no two MS patients are the same, choosing the right drug can also be a challenge. There are now 11 licensed medicines available to the newly diagnosed relapsing-MS patient, to help reduce the relapse rate. It is essential that patients have reliable long-term prognostic information to allow them, together with their doctor, to make informed decisions on which treatment is best for them.
“FutureMS is a ground-breaking Scotland-wide observational study involving 400+ newly diagnosed relapsing-MS patients. It aims to develop tools that will allow doctors to predict, at the point of diagnosis, each patient’s long-term outlook. This will empower patients to make decisions about their treatment and lifestyle choices.”
Participants in the FutureMS study are attending one of five project hubs in Inverness, Glasgow, Edinburgh, Dundee and Aberdeen where they take part in MRI brain scanning and genetic testing. The scan images, along with their clinical, genetic and lifestyle data are collected and stored centrally. Each participant is seen twice, twelve months apart, which will take until 2020 to complete.
Once the data from all patients is collected, the project team will carefully examine it, looking for patterns that might allow them to predict disease activity. Better prediction could potentially allow patients to be given the right treatment for them as quickly as possible, which will make a huge difference to the quality of their lives.