Fifteen multiple sclerosis (MS) experts from eight countries across Europe, U.S., and Canada have been convening to develop consensus-driven statements on smoldering MS across multiple domains.
Antonio Scalfari, MD, PhD, of Imperial College London in England, describes smoldering MS, the process they have been using to help better define it, and the importance of .
Following is a transcript of his remarks:
In seeing these patients getting worse despite achieving a successful suppression of relapses and MRI [activity] with our widely available treatments -- it is quite a common clinical scenario. We use these very potent drugs and we are successful in avoiding these people to experiencing new activity on the MRI, new relapses.
But, yet, it's not uncommon that when they attend clinic, patients report that they're getting worse somehow. And the worsening is not the dramatic symptoms related to a relapse; it is not accompanied by any radiological progression. But yet it's that subtle worsening, which often implies increasing fatigue or very subtle weakness in one of the legs that is more noticeable after long walls or after a run, or even simply a worsening of their sport performance.
So, just a large umbrella of symptoms that cannot be classified as a classic relapse, are not accompanied by any changes in MRI, but rather are the consequence of a probably subtle, smoldering chronic process that drives this gradual deterioration unrelated to relapses, which is in a way already emerged as a sort of PIRA -- progression independent of relapsing activity -- but PIRA is only one side of the coin.
I think what we are trying to promote is an idea of a much larger umbrella of symptoms that goes beyond PIRA itself. PIRA is certainly one part of the smoldering process, but not necessarily the only thing. And we try to emphasize the fact that we need clarity in defining smoldering MS. What are the symptoms related to smoldering MS? What are the biomarkers? What could be the clinical outcome that helps to identify changes related to smoldering MS? What could be the pathological substrate for smoldering MS?
And in order to achieve clarity, we've been meeting on a regular basis for the past 2 years, a group of 15 MS experts to discuss all these aspects and to reach an agreement. We use a methodology, which is called the Delphi method, which allows people to agree to rate their agreement in terms of statements that are proposed, covering wide aspects of smoldering MS.
So, we are getting into the final stage of this very long and tiring process, which eventually will be published for bringing the community some clarity. Because I can see -- and this was clear in the latest ECTRIMS conference -- there's smoldering MS everywhere, but everyone talks about smoldering MS in a different way. It is often referred [to] as results of chronic neuroinflammation, but certainly that is too simplistic. It is not simply related to chronic smoldering inflammation, but there's a much larger, much wider pathological substrate. So, it's important to bring clarity to the scientific community and that is the purpose of our study.