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Global Demyelinating Disease Registry (NARCOMS)

This study is currently recruiting participants.
Verified September 2017 by Amber Salter, Washington University School of Medicine
Sponsor:
ClinicalTrials.gov Identifier:
NCT01018537
First Posted: November 23, 2009
Last Update Posted: September 13, 2017
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.
Collaborator:
Consortium of Multiple Sclerosis Centers
Information provided by (Responsible Party):
Amber Salter, Washington University School of Medicine
  Purpose

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.


Condition
Multiple Sclerosis

Study Type: Observational
Study Design: Observational Model: Other
Time Perspective: Prospective
Official Title: NARCOMS Global Multiple Sclerosis Registry: A Long-Term Study to Facilitate Research in Multiple Sclerosis

Resource links provided by NLM:


Further study details as provided by Amber Salter, Washington University School of Medicine:

Primary Outcome Measures:
  • Disease progression over time of follow up [ Time Frame: up to 15 years ]

Secondary Outcome Measures:
  • Contributing factors to change in MS disease status [ Time Frame: up to 15 years ]

Other Outcome Measures:
  • Medication usage in multiple sclerosis [ Time Frame: up to 15 years ]

Estimated Enrollment: 50000
Study Start Date: January 1996
Estimated Primary Completion Date: December 2050 (Final data collection date for primary outcome measure)
Detailed Description:

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.

  Eligibility

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.


Ages Eligible for Study:   18 Years and older   (Adult, Senior)
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:

  Contacts and Locations
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
Contact: NARCOMS Team 1-800-253-7884 MSregistry@narcoms.org

Locations
United States, Missouri
Washington University School of Medicine Recruiting
Saint Louis, Missouri, United States, 63110
Contact: NARCOMS Team    800-253-7884    MSregistry@narcoms.org   
Principal Investigator: Amber Salter, Ph.D.         
Sponsors and Collaborators
Washington University School of Medicine
Consortium of Multiple Sclerosis Centers
Investigators
Study Director: Robert J. Fox, M.D. Mellen Center for MS / Cleveland Clinic
Principal Investigator: Amber Salter, Ph.D. Washington University School of Medicine
Study Chair: Tuula Tyry, Ph.D. Dignity Health, St. Joseph's Hospital and 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

Additional Information:
Publications:

Responsible Party: Amber Salter, Assistant Professor, Washington University School of Medicine
ClinicalTrials.gov Identifier: NCT01018537     History of Changes
Other Study ID Numbers: 20081794
First Submitted: November 19, 2009
First Posted: November 23, 2009
Last Update Posted: September 13, 2017
Last Verified: September 2017

Keywords provided by Amber Salter, Washington University School of Medicine:
Multiple Sclerosis
NARCOMS
Global Patient Registry

Additional relevant MeSH terms:
Sclerosis
Multiple Sclerosis
Demyelinating Diseases
Pathologic Processes
Demyelinating Autoimmune Diseases, CNS
Autoimmune Diseases of the Nervous System
Nervous System Diseases
Autoimmune Diseases
Immune System Diseases