Despite advances in other forms of MS, progressive MS remains frustratingly elusive to understand and treat. Progressive MS does not have a single, identifiable disease pattern, so one person’s experience of living with it can be very different from another’s.
As well as the fear and uncertainty this causes people with progressive MS, it also presents a challenge for clinicians and researchers.
Understanding the biological changes that determine progression is crucial to the identification and development of therapies for people living with progressive MS.
The Alliance has come together to overcome four major barriers to progress:
Lack of understanding of progressive MS
Researchers lack the knowledge to focus and accelerate progress, and clinicians are challenged to identify effective treatments.
Lack of models for testing progression
As most diseases develop, there are usually identifiable characteristics that mark the progress of a condition. These biomarkers play a vital role in both diagnosis and development of treatments. Progressive MS has to far eluded all efforts to identify these biomarkers. This is a major barrier to advancing diagnosis, therapy and treatment.
Slow and costly trials
There are too few new treatments being developed and tested. This is largely because existing trials take too long. This increases cost, and in many cases makes it too difficult to measure and prove positive patient outcomes. Developing new treatments is expensive so slow trials and uncertain outcomes make it hard to risk investment in a treatment that may never be approved.
Unclear evidence about how to make decisions about rehabilitation and symptom management
For people who had already received a diagnosis of progressive MS, there is a confusing array of messages about how quality of life can be improved, but little clear evidence. Because of this, managing symptoms and making decisions about lifestyle, rehabilitation and exercise are often hard.