NARCOMS Registry: A Multiple Sclerosis Registry

Study Overview
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Brief Summary
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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: https://redcap.link/py2rnyyn) 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.

Detailed Description
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The data coordinating center, located at the University of Texas Southwestern Medical Center, 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 41,000 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.

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

Conditions
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Multiple Sclerosis

Participation Criteria
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Eligibility Criteria
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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: None

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Disease progression over time of follow up | Disease Progression measured using the Patient Determined Disease Steps | up to 15 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Contributing factors to change in MS disease status | Factors include, but not limited to, demographics, lifestyle and clinical characteristics | up to 15 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Registry, Multiple Sclerosis, NARCOMS, Patient Registry