NARCOMS Registry: A Multiple Sclerosis Registry



Status:Recruiting
Conditions:Neurology, Multiple Sclerosis
Therapuetic Areas:Neurology, Other
Healthy:No
Age Range:18 - Any
Updated:5/5/2018
Start Date:January 1996
End Date:December 2050
Contact:NARCOMS Team
Email:MSregistry@narcoms.org
Phone:1-800-253-7884

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NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis

This project is based on the idea that we can learn about the complexities of MS by following
disease and treatment patterns in a large group of people over several years. The information
gathered is used for research only. Results are presented in summary form only. All details
submitted by registry participants is strictly confidential.

To participate in NARCOMS complete the baseline enrollment survey online through
www.narcoms.org (or directly using the following link: http://j.mp/2jJm5lK) or you can
request a mail-in survey be sent to you by emailing MSregistry@narcoms.org. You will be asked
to update your information, online or by mail, twice a year. Each update survey typically
takes less than 20 minutes to complete.

There is no cost to participate. For your participation you are offered a free subscription
to the NARCOMS quarterly magazine, NARCOMS Now. NARCOMS Now provides a reliable source of
information about the latest in MS research and disease management. You can stop
participating in the registry at any time.

You may also receive additional surveys or information on clinical trials. You are not
obligated to participate and these additional studies will always come directly from NARCOMS.
Your contact information will not be shared or sold to other parties.

The data coordinating center, located at Washington University, maintains NARCOMS, the worlds
largest voluntary, patient driven MS registry. The registry involves personnel from at least
three other sites in the US and Canada (Cleveland Clinic Foundation, University of Alabama at
Birmingham, and the University of Manitoba in Canada). Over the past 20 years more than
38,000 people with MS across the U.S., Canada and over 50 other countries, including over
4,000 Veterans, have participated in the registry by submitting their health-related data by
mail or online. Registry data have been featured in over 100 peer-reviewed journal articles,
scientific posters and presentations. These reports have provided information to guide new
research. They also provide evidence supporting the approval of new drugs in the fight
against MS.

The North American Research Committee on Multiple Sclerosis (NARCOMS) is supported in part by
the Consortium of Multiple Sclerosis Centers (CMSC), a not-for-profit professional
organization for multiple sclerosis (MS) healthcare providers and researchers involving 198
participating centers of the MS treatment and research community.

Inclusion Criteria:

- Any individual who has been diagnosed with multiple sclerosis or clinically isolated
syndrome

- Must be at least 18 years of age

Exclusion Criteria:
We found this trial at
1
site
660 S Euclid Ave
Saint Louis, Missouri 63110
(314) 362-5000
Principal Investigator: Amber Salter, Ph.D.
Phone: 800-253-7884
Washington University School of Medicine Washington University Physicians is the clinical practice of the School...
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mi
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Saint Louis, MO
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