Predicting Progression: Science Fiction or Reality?

Yesterday, we posed a question on our Facebook page and asked people to use reactions to indicate how they would vote…

Some people may be wondering if this was a purely philosophical exercise.  That is, as multiple sclerosis is so unpredictable, if you had the ability, would you want to know how far the disease would have progressed in 5 years?  Or would you prefer to just live each day and not know what the future held…good, bad or otherwise?

In fact, the reason for asking that question was completely based in reality.  We are at a stage where large amounts of clinical data is being collected from people living with multiple sclerosis all around the world.  This has been happening for over 10 years, meaning that this information can start to be used to paint a long-term picture of the experiences of these individuals.

But how does this help us with being able to predict outcomes for people living with MS?

Let’s think about it like this….

Imagine you had seen an animal that you’ve never seen before and you want to know what it is.  You find a book that says it can help you identify any creature, just by answering a series of questions.

• Does it have fins, legs or wings?
• Does it have two legs or four legs?
• Does it have a tail?

And so on and so forth, until it turns out that what you are looking at is a grizzly bear and it’s time run (or play dead, which is it again?).

It is possible to reach that conclusion because someone has collected all of this information about all of the animals over a long period of time.

So now imagine a scenario when it is a person living with MS…what sort of features might we be looking at?

• Are they male or female?
• How long have they been diagnosed?
• How many lesions do they have on their MRI?
• What is their vitamin D level?
• What treatment are they taking?
• How long have they been taking that treatment?

Then all of those answers can be compared to all of the data that has been collected from other people around the world to find a number of people that are good matches (that is, have similar characteristics).  As the stored data has been collected over many years, it would be possible to look into the future and see how those matches had progressed over 2, 5, 10 or more years…and by doing that, it is possible to start to better predict outcomes.

This isn’t the easiest concept and it may be a little confusing, so please do feel free to ask questions if you have any.  I think it is a really important concept to understand.

And back to the original post…the reason that we asked the poll…I was genuinely interested in knowing whether or not this research was something that was wanted by the community or if, as the posts suggests, “ignorance is bliss”.  The results so far show overwhelmingly that people would want to know, thus making this research even more important.  We will keep you updated as it continues to progress from a great idea to reality.

As a final point, we all know that MS is unpredictable.  It is highly unlikely that we will ever get to a point where we can state future outcomes in MS with 100% certainty, it is always going to be a ‘best guess’…but an educated guess based on huge amounts of data is a pretty good starting point!