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NARCOMS Registry: A Multiple Sclerosis Registry (NARCOMS)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
 
ClinicalTrials.gov Identifier: NCT01018537
Recruitment Status : Recruiting
First Posted : November 23, 2009
Last Update Posted : December 1, 2022
Sponsor:
Collaborator:
Consortium of Multiple Sclerosis Centers
Information provided by (Responsible Party):
Amber Salter, University of Texas, Southwestern Medical Center at Dallas

Study Description
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Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information
Brief Summary:

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.


Condition or disease
Multiple Sclerosis

Detailed Description:

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.

Study Design
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Study Type : Observational [Patient Registry]
Estimated Enrollment : 50000 participants
Observational Model: Other
Time Perspective: Prospective
Target Follow-Up Duration: 10 Years
Official Title: NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis
Study Start Date : January 1996
Estimated Primary Completion Date : December 2050
Estimated Study Completion Date : December 2050

Resource links provided by the National Library of Medicine


Groups and Cohorts
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Outcome Measures
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Primary Outcome Measures :
  1. Disease progression over time of follow up [ Time Frame: up to 15 years ]
    Disease Progression measured using the Patient Determined Disease Steps


Secondary Outcome Measures :
  1. Contributing factors to change in MS disease status [ Time Frame: up to 15 years ]
    Factors include, but not limited to, demographics, lifestyle and clinical characteristics


Other Outcome Measures:
  1. Medication usage in multiple sclerosis [ Time Frame: up to 15 years ]
    Disease modifying therapy use is collected from participants


Eligibility Criteria
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Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Individuals who have been diagnosed with multiple sclerosis
Criteria

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
Contacts and Locations
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Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01018537


Contacts
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Contact: NARCOMS Team 1-214-648-4583 MSregistry@narcoms.org

Locations
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United States, Texas
UT Southwestern Medical Center Recruiting
Dallas, Texas, United States, 75390-8806
Contact: NARCOMS Team    214-648-4583    MSregistry@narcoms.org   
Principal Investigator: Amber Salter, Ph.D.         
Sponsors and Collaborators
University of Texas Southwestern Medical Center
Consortium of Multiple Sclerosis Centers
Investigators
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Study Director: Robert J. Fox, M.D. Mellen Center for MS / Cleveland Clinic
Principal Investigator: Amber Salter, Ph.D. University of Texas Southwestern Medical Center
Study Director: Gary R Cutter, Ph.D. University of Alabama at Birmingham
Study Director: Ruth Ann Marrie, M.D., Ph.D. University of Manitoba
More Information
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Additional Information:

Publications:

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Responsible Party: Amber Salter, Associate Professor, University of Texas, Southwestern Medical Center at Dallas
ClinicalTrials.gov Identifier: NCT01018537    
Other Study ID Numbers: 20081794
First Posted: November 23, 2009    Key Record Dates
Last Update Posted: December 1, 2022
Last Verified: November 2022
Keywords provided by Amber Salter, University of Texas, Southwestern Medical Center at Dallas:
Multiple Sclerosis
NARCOMS
Patient Registry
Registry
Additional relevant MeSH terms:
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Multiple Sclerosis
Sclerosis
Pathologic Processes
Demyelinating Autoimmune Diseases, CNS
Autoimmune Diseases of the Nervous System
 Nervous System Diseases
Demyelinating Diseases
Autoimmune Diseases
Immune System Diseases