We have all heard time after time that MS is an unpredictable disease and that it is impossible to say with any certainty what will happen to people as they live with this disease. However, although I agree that it is difficult to say exactly what will happen to an individual with MS, what if there was data on what has happened to lots and lots of people with MS? From that, one could build a model of what was likelyto happen to individuals living with MS.
The MSBase registry is a very large international database containing information about almost 20,000 people living with MS from different countries (to see how many individuals from each country are represented, click here: Patient Enrollment by Country). It is intended to be used by individuals and research centers conducting observational research on people with MS. However, a new online tool has been developed that we can all use.
Called the MS Severity Rank Calculator, this tool allows comparison of an individual's disease severity (as measured by the Expanded Disability Severity Scale, or EDSS) to people who have had MS for the same amount of time. The data in the MSBase registry is updated regularly, so it will reflect the changes in MS disease course over time due to improved diagnostics and uptake of disease-modifying therapy.
You can enter your EDSS scores (or estimated EDSS) at different points after diagnosis and see where you are in terms of disability in relation to other people with MS. In addition, you will be able to see your trajectory of relative disease progression over time, allowing you to have a visual estimate of the course your MS is likely to take.
I was fortunate enough to meet one of the creators of MS Base, Helmut Butzkeuven of Australia. I complimented him on the creation and ease of use of the MS Severity Rank Calculator. I ended by saying, "Wow, if I had that much data at my disposal, I would play with it all day." Without missing a beat, Dr. Butzkeuven replied, "We do."