Public Release:  International committee re-defines how multiple sclerosis is described and understood

Published results will facilitate research and communication

National Multiple Sclerosis Society

Multiple sclerosis manifests itself in many different ways and different courses. A recent effort to fine-tune descriptions - or phenotypes -- of MS was undertaken by an international team of leaders in MS research and clinical care. The results of this effort by the International Advisory Committee on Clinical Trials in MS, including recommendations for more research, has just been published (Neurology 2014;83:1). The volunteer Committee is jointly supported by the National MS Society and the European Committee for Treatment and Research in MS (ECTRIMS).

"Having better definitions of different types of MS would greatly facilitate research studies, communications between people with MS and their healthcare providers, and treatment decisions," noted Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer of the National MS Society.

In 1996 the Committee had developed consensus around descriptions of the courses of MS to facilitate research in MS and so that researchers and clinicians around the world would have a common understanding of the types of MS discussed in publications and in the clinic. This consensus highlighted four courses of MS -- relapsing-remitting, secondary progressive, primary progressive, and progressive relapsing. While these descriptions of MS have become well-established, understanding of MS has advanced, prompting a re-evaluation of the course of MS and any biological signposts (such as blood markers or imaging) that might help refine these phenotypes.

After a thorough search of the medical literature and convening an international workshop funded by collaborators worldwide (National MS Society, ECTRIMS, Americas Committee for Treatment and Research in MS, MS International Federation, and MS Society of Canada), the Committee published recommendations that modify prior clinical course descriptions. The Committee recommended retaining major courses of MS - relapsing-remitting, secondary-progressive and primary progressive -- but recommended categorizing progressive relapsing as an active form of primary progressive MS.

Importantly, they recommended that clinicians not just determine a person's course of MS, but further sub-categorize that course as "active" or "not active" (depending on the presence of clinical relapses or activity on MRI scans) or as progressing (worsening) or not progressing, based on clinical evidence of changes in disability. "This will provide a truer picture of what an individual experiences," added Dr. Coetzee.

"These revisions should make communication with patients and among physicians clearer and should also enhance the design, recruitment and conduct of clinical trials, which will further help us understand the disease," noted Fred D. Lublin, MD, Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at The Icahn School of Medicine at Mount Sinai, and the article's lead author.

Areas recommended for further research by the Committee include long-term studies to track people with MS over time, imaging studies to gain a window on brain and spinal cord damage caused by the disease, biomarkers that might differentiate types of MS, and patient-reported outcomes. Researchers funded by the National MS Society and others worldwide are already working toward many of these goals, in efforts to help people with MS live their best lives. In addition, this information will be considered by the Society's leadership as it develops future research strategies.

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The free-access paper is now available on the Neurology Website: http://www.neurology.org/content/early/2014/05/28/WNL.0000000000000560.full.pdf+html

About Multiple Sclerosis

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. According to the National MS Society, MS affects more than 2.3 million worldwide.

About the National Multiple Sclerosis Society

http://www.nationalMSsociety.org

The Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world, and provides programs and services designed to help people with MS and their families move their lives forward. To move us closer to creating a world free of MS, last year alone, the Society invested over $48 million to support more than 380 new and ongoing research projects around the world while providing program services to over one million people. Read more about the Society's research efforts aimed at stopping MS, restoring function, and ending the disease forever: http://www.nationalmssociety.org/Research/Research-We-Fund

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