Should the Way We Describe MS Progression Change?

A recent survey conducted by the International Advisory Committee on Clinical Trials in Multiple Sclerosis (MS), aimed to assess the perspective of the scientific and clinical community on the need for updating the clinical course descriptors for MS.

In this video, Timothy Coetzee, PhD, Chief Advocacy, Services & Science Officer for the National Multiple Sclerosis Society, discusses the results of the survey and the next steps.

Following is a transcript of his remarks:

The survey followed a paper that the committee published earlier in 2023 that focused on proposing a new framework for MS progression. The key points of that paper were that progression starts much earlier. We need to consider factors such as aging, biological aging, and loss of reserve, and really begin to think about the tools by which we monitor progression.

As a result of that paper, we then began to tackle how we describe MS, the current clinical course descriptors, which were revised in 2013 by the Clinical Trials Committee. And one of the steps that we’ve wanted to take is to understand what is the scientific and clinical community’s perspective on whether or not the clinical course descriptors, as we have them today, need to change.

And we wanted to understand where the community stood, because — since these descriptors are used throughout all of healthcare — it’s important to understand what would be involved in changing them.

And so this survey, which resulted in 500 responses, found that nearly 77% of the community felt that change was needed. But they also insisted that change and a new set of clinical course descriptors, if we were to create them, need to be clinically validated. They need to inform patient care and treatment decisions. They must be easy to communicate to the patient, and importantly, must also guide research and clinical trials.

And so while on the one hand, the community feels that it is time to evolve, they also want us to do that in a careful and methodical manner. And so the next steps from these findings are for our committee to begin working on what would be a future approach to refining or evolving the clinical course descriptors for MS — with the goal of making it easier for physicians to understand and treat their patients, and also for patients to understand what their disease is.

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