Global Demyelinating Disease Registry (NARCOMS)

This study is currently recruiting participants. (see Contacts and Locations)
Verified May 2014 by University of Alabama at Birmingham
Sponsor:
Collaborator:
Consortium of Multiple Sclerosis Centers
Information provided by (Responsible Party):
University of Alabama at Birmingham
ClinicalTrials.gov Identifier:
NCT01018537
First received: November 19, 2009
Last updated: May 22, 2014
Last verified: May 2014
  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 at www.narcoms.org or you can request a mail-in survey be sent to you using the contact information provided. You will be asked to update the survey, online or by mail, twice a year. Each survey typically takes less than 20 minutes to complete. Surveys are available in English and Spanish.

There is no cost to participate, for your participation you are offered a free subscription to the NARCOMS Quarterly Magazine. A quarterly magazine delivered to all NARCOMS participants provides a reliable source of information about the latest in MS research and disease management. You can quit participating 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: 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 University of Alabama at Birmingham:

Primary Outcome Measures:
  • Disease progression over time of follow up [ Time Frame: up to 15 years ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • Contributing factors to change in MS disease status [ Time Frame: up to 15 years ] [ Designated as safety issue: No ]

Other Outcome Measures:
  • Medication usage in multiple sclerosis [ Time Frame: up to 15 years ] [ Designated as safety issue: No ]

Estimated Enrollment: 50000
Study Start Date: January 1996
Estimated Primary Completion Date: December 2020 (Final data collection date for primary outcome measure)
Detailed Description:

The data coordinating center, located at University of Alabama at Birmingham (UAB), 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 (Rocky Mountain Multiple Sclerosis Center Anschutz Medical Campus in Aurora Colorado, Barrows Neurological Institute in Phoenix Arizona, and the University of Manitoba in Canada). Over the past 10 years more than 35,000 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 34 peer-reviewed journal articles and more than 80 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

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
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
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, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01018537

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

Locations
United States, Alabama
University of Alabama at Birmingham Recruiting
Birmingham, Alabama, United States, 35294
Contact: NARCOMS Team    800-253-7884    MSregistry@narcoms.org   
Principal Investigator: Gary Cutter, Ph.D.         
Sponsors and Collaborators
University of Alabama at Birmingham
Consortium of Multiple Sclerosis Centers
Investigators
Principal Investigator: Robert J. Fox, M.D. Mellen Center for MS / Cleveland Clinic
Study Director: Gary Cutter, Ph.D. University of Alabama at Birmingham
Study Chair: Tuula Tyry, Ph.D. Barrow Neurological Institute
  More Information

Additional Information:
Publications:

Responsible Party: University of Alabama at Birmingham
ClinicalTrials.gov Identifier: NCT01018537     History of Changes
Other Study ID Numbers: 20081794
Study First Received: November 19, 2009
Last Updated: May 22, 2014
Health Authority: United States: Institutional Review Board

Keywords provided by University of Alabama at Birmingham:
Multiple Sclerosis
NARCOMS
Global Patient Registry

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

ClinicalTrials.gov processed this record on September 22, 2014