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New terms for MS types.

The names or terms we use for concepts allow us to communicate what we mean, but communication is accurate only when we use terms that everyone understands and uses in the same way.

As more knowledge has developed about the nature of MS, the traditional names we have used to define different disease types and their courses have come into question. It has become increasingly clear that different physicians have been using different terms to describe the same things. So, when Dr. X talks about "relapsing-remitting MS", he may mean something very different than Dr. Y does!

Accurate communication is hindered -- and worse, clinical studies that are meant to be restricted to people with "relapsing-remitting" disease can become confused. This can lead to unreliable findings.

In 1995-96, the Society's Advisory Committee on Clinical Trials of New Agents in MS, headed by Dr. Fred D. Lublin of Jefferson Medical College in Philadelphia undertook an international survey of more than 215 physicians with experience in treating MS and asked exactly what these physicians meant by "relapsing-remitting", "relapsing-progressive", "primary progressive", "secondary progressive" and so forth.

The replies showed agreement on some terms, but wide confusion on others. Out of the survey came a proposal for new standard terminology. The proposal was published in the medical journal Neurology in the spring of 1996 with a recommendation that the following terms and definitions be accepted as the new international standards:

* relapsing-remitting: MS with clear relapses (also called acute attacks or exacerbations) with either full recovery, or with partial recovery and lasting disability (see figure 1). Between attacks, there is no progression (or worsening) of disease.

* primary progressive: MS with steady progression (or worsening) from onset, with only occasional plateaus or minor recovery. This is a fairly uncommon disease course, and one that may involve different brain and spinal cord damage than do other forms of MS.

* secondary progressive: MS that begins with a pattern of clear-cut relapses and recovery but becomes steadily progressive over time with continued worsening between occasional acute attacks (see figure 2).

* progressive-relapsing: a rare type of MS that is steadily progressive from onset but also has clear acute attacks.

Some previously used terms have been abandoned in this new set of definitions. For example, "relapsing-progressive" was widely used, but the survey showed that it described different kinds of disease for different physicians. Either "relapsing-remitting" or "secondary progressive" will now be used instead.

The term "chronic progressive" has also been abandoned. Better understanding of MS has made it clear that progressive disease may be primary or secondary, and that these patterns may represent very different forms of the disease. Lumping both into a single category is no longer reasonable.

What does this mean to people with MS?

As the new terminology becomes more widespread, individuals with MS will have a better sense of their disease and more confidence that their physicians are all speaking the same language. Clinical trials of new treatments, which are often restricted to one disease type, will be more secure in their design; and recommendations for treatment based on such trials will be more accurate.

Names may seem a small matter, but these changes in terminology are yet another sign of our increasing ability to understand MS and to be more efficient and accurate in our efforts to treat it.

Stephen Reingold is vice president of the National MS Society's Research and Medical Programs.
COPYRIGHT 1996 National Multiple Sclerosis Society
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Copyright 1996, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Title Annotation:multiple sclerosis
Author:Reingold, Stephen C.
Publication:Inside MS
Date:Sep 22, 1996
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